The Adventures of the Courington Family

Here We Are

2012-01-25T22:49:00.002-06:00

I will blog again someday...
This will not just be a medical blog someday...
This will include precious pictures and funny stories of my darling children again someday...

But for now, here we are...

Tonight I've got two out of two kids on medicine for strep throat. I've got a bag partially packed for the hospital for Leah's surgery Friday. I've got a little sweetheart (6 months old) that I've been babysitting since I quit teaching in December, who has the worst case of chicken pox I (and the pediatrician and the nurses at the hospital) have ever seen. We've had multiple doctor's appointments, medicines, phone calls to warn those we've exposed to both illnesses and sick days spent in our pajamas this week. I'm tired and the "fun" hasn't started yet.

Leah had her second sleep study in November and we knew pretty quickly that she would need to be on a CPAP. Before they started the sleep study they let her try on the mask and feel the air pressure for about 10 minutes. When I saw them put the mask on her, I assumed she would freak out. Leah doesn't even like the feel of embroidered shirts and this mask is something else. Much to my surprise, she settled in on my lap and watched tv for 10 minutes totally peaceful. When they took it off, she made the comment that the mask "made her feel good". I thought that was really weird at the time and stored it in my "mention to the doctor later" file. By morning it was very apparent she slept better with the CPAP and she even asked to take the machine home. I was shocked and saddened by the fact that she had been sleeping that lousy.

The MD doctor called us and went over the results, which, once again, included that she needed to have her tonsils and adenoids removed. Since she had this done in January, he was concerned that there was something else causing an obstruction. He referred us to a pulmonoligist who specializes in pediatric sleep apnea. We contacted Kate's pulmo, since we have history with her and love her, and she also recommended we see Dr. K. The appointment was set for this week.

In December, I took Leah in for an eye check up since she failed her vision test at school. She has never complained of headaches, blurred vision or trouble seeing and we've never noticed any squinting. She has yet to get below a 95 on her report card and is an excellent reader so we had every reason to believe her vision was fine. Wrong again! She has an astigmatism in both eyes and 20/40 in one eye and 20/70 in the other. She is the proud owner of pink glasses. She hasn't complained about them once and wears them, without us asking, from the time she wakes up until she goes to bed. Apparently she knows she needs them. Again, I felt bad.

This Sunday Leah came down with strep throat, after her best friend had it last week. We called the pulmonoligist we had a 2:00 appointment with on Monday to see if they would prescribe her an antibiotic while we were there and they said it would be no problem. We got to the appointment and the doctor spent 4 minutes reading us the report summary from the last sleep study word for word. In that 4 minutes I learned that she has moderate Obstructive Sleep Apnea and needs a BiPAP machine that is set at 12/6 and that it would be delivered later this week. That was it. I drug the doctor through my questions and got a little extra information. Here are some of the things I learned from my questions, reading the sleep study and google.

- A CPAP machine gives constant pressure when you inhale while sleeping. Inhaling takes more work than exhaling. This is the most common treatment for Obstructive Sleep Apnea, OSA.

- A BiPAP machine gives you constant pressure when you inhale and exhale. Exhaling is usually tolerated well while sleeping. In Leah's case, she is not inhaling or exhaling fully, causing a disruption in her sleep, on average, every 6 minutes through the night. That is why she needs a BiPAP versus the CPAP.

- Leah has OSA, most likely because of having poor muscle tone in her chest, diaphragm and lungs. She also gets into patterns between the OSA episodes where she breathes way too shallowly. This is also because of muscle weakness.

I mentioned Leah's comment about liking the mask while being awake and the doctor didn't have a good answer. I pushed for doing a lung function study on her and the doctor finally agreed to do some basic studies on her. Those results came back showing that her lungs are not functioning well when she is awake either. When I expressed concern over this finding the doctor said she would check it at future visits to see if we could tell if she is getting sick or not. I understand that concept for peak flow meter users, but I don't think it has anything to do with Leah's case.

She also decided she didn't want to give Leah antibiotics, leaving us in a pinch to get her on meds quickly. On top of that, as I was pumping gas and reading the sleep study report, I found a page diagnosing Leah with obesity and a fatty liver, in addition to OSA. I was REALLY shocked at that until I noticed another patients name, date of birth and medical record numbers at the bottom. I still need to call them and make sure they didn't accidentally put those diagnoses on her chart. All in all I was unimpressed with this specialist. The positive is her BiPAP is arriving tomorrow and I received a copy of the lung function study and sleep study that I can take to her MD specialist. It is one more piece of the puzzle for him to see what is being effected.

On Friday, Leah goes in for a deep muscle biopsy. Three of the DNA labs they ran 4 months ago came back with abnormal results. This could be incidental or could be key to her diagnosis. In the muscle biopsy the surgeon goes into her thigh, almost to the bone and retrieves a small piece of muscle to send to the lab. In the lab, they can break down each fiber of the muscle and see where there is growth, damage and abnormalities. Apparently they start on a basic level and then spend several months staining and researching any abnormalities they find in each layer. We probably won't get results for several months, but at least it's getting done. From what I understand, this is the test that is most likely to provide answers towards a diagnosis and prognosis. As we've learned before, there are no guarantees, but we are hoping for some more pieces of the puzzle to be revealed.

We thought the procedure was a quick outpatient procedure, but it's a little more involved. We will be there for at least 24 hours. After the surgery the surgeon has to stitch up each layer from the inside out, resulting in 6 or 7 layers of stitches internally. Since there is a big chance of tearing and bleeding, Leah will not be allowed to go to recess or PE, play outside or take part in dance or any of her therapies for at least 3 weeks. After 3 weeks we return to hopefully get an "all clear". Leah is a little nervous about the procedure and is not looking forward to the recovery, but she is doing a great job of talking about it which is great.

As always, your prayers are much appreciated!

Sleep Study, Heart Tests and PT

2011-09-25T22:29:00.004-05:00

Monday was a very busy medical day with a lot of new "pieces" to the puzzle. Since neither of the girl's issues have been clear cut diagnoses, I've started looking at their medical stuff as a puzzle. Each test we get results for gives us another piece of the puzzle and eventually, I hope, there will be something recognizable there. We started the morning bright and early downtown for an appointment with a neurologist who specializes in sleep disorders. We reviewed the results of Leah's sleep study and she has sleep apnea. He ordered a second sleep study with a CPAP to take measurements and then they will order her the machine. He said that Leah's is not the typical sleep apnea where people hold their breath. Instead her body slips into these patterns where her breathing becomes slow and very shallow. This causes her to wake up (not where she knows it) and is causing her to have fragmented sleep. This could be why she seems tired often, wears out easily, requires more sleep and is so emotional, especially when she's tired. He doesn't think it is extremely serious or life threatening, but he does want her on the CPAP every night. He was not certain if this breathing pattern is because of whatever is going on muscularly or if it is a result of the way she was made (tiny airway, tiny mouth, etc). If it is muscular, it could improve as we work to get her stronger, but could worsen if her overall tone worsens. If it's structural, it could get better as she gets bigger. Either way he said to plan on the CPAP for the next few years, minimum.

After the appointment we went back down to the lab. With all of our insurance changes, we don't have the luxury to sit and wait for the DNA results to come back to know what tests we need to order next. The DNA takes 6-8 weeks and by then the new plan will be in effect with the new deductibles and policies. Our neurologist at the MDA clinic decided to go ahead and order the next round of tests so that we could get those covered on our current plan as well. This blood draw was no better than the last and was made more difficult by having Kate with us. Leah was in one corner screaming, kicking and hitting and Kate was in the other holding her ears and yelling at Leah to stop scaring her. After a few minutes of screaming, "the enforcer" came in. She remembered Leah from a few weeks ago and recognized her by her scream before entering the room. We were able to get the draw and will know the results of those in 6-8 weeks too.

From there it was off to the cardiology clinic for her echo and EKG. Since her muscle weakness is all over, there is good reason to suspect it will or can effect every muscle. She has been having occasional accidents and has very little ability to wait when she feels the urge to go. Despite living 2 miles from the school, we have to stop at the gas station on the way home quite often. I don't believe that this is an attention seeking act, especially after seeing how distraught she was the last time this happened in public. Back to the heart.... The MDA doctor wanted to get a good look at her heart just be sure the weakness wasn't affecting it. By this point Leah was exhausted. I think walking into the echo room scared her too because it looked similar to the sleep study room. She hated the sleep study. At it, she screamed every time they cleaned a spot to put the electrode on and taking them off was a nightmare. The tech had asked if she was always so difficult and frankly I was embarrassed by her behaviour. However, two days later she still had red marks all over her face and after talking to others who have had them, I think she had a reaction to the cleaner. When we walked into the echo room, she hid in a corner and was completely uncooperative. I finally carried her over to the bed, pinned her down and we got it done. She has such a hard time with so many of the tests and it is heartbreaking and so stressful to be the momma having to go through it with her. The last few months have been very reminiscent of the week she spent at the hospital as an infant.

From there, we went to physical therapy. Leah absolutely loves PT and her physical therapist Miss Kelly. I had discussed my concern with the discrepancies about the level of weakness that we've heard from doctors, therapists, etc. last week. As a result, she decided to schedule a specific evaluation for this session so that we could have something more tangible. This evaluation has a list of activities for Leah to try and then gives a percentile for her results. It showed she is in the 16th percentile for 5-6 year olds (she is 7). This is probably about what I would have guessed. Kelly did say she felt that this was higher than what it would have been months ago when we started therapy. It is great that we are making some improvement, but we still have a long ways to go. She said she would not be comfortable releasing her until she hit at least the 50th percentile. It is nice to have a number and a goal though.

I talked with the MDA neurologist on Friday night and he has an appointment set up for us to see the surgeon for the muscle biopsy. We will see if we can get that done before the insurance change (in 6 days....very slim chance) and if not, we will wait until we get all the DNA results back. We may put that off until after January 1st to get it in on the new deductible. I asked about the echo and EKG results and he thought they were all in. We had them done at the same time at the same place by the same tech which means that the same doctor read them both and reported on them. However, only the results for the EKG were in the system. He said the results for the EKG showed that the left side of her heart was enlarged (which is a sign of heart failure), but that this may or may not be true. The echo shows an actual picture of what is going on versus just the electrical activity. Trying to track down the echo report at 6:00 on a Friday seemed impossible and he said he would call first thing Monday morning to find it.

Both of my girls are excellent at situations like this. We constantly hear things like this. It's always for highly probable stuff too. If she had muscle weakness in her heart, there is a good chance that this is what it would look like on an EKG. We never get incomplete ridiculous answers like, "The lab work shows your 7 year old is really male" or "It appears your 3 year old is pregnant". It's not that I want to hear something bizarre like that. It's just it is always stuff like this where it makes too much sense and leaves you hanging over a weekend (usually a holiday weekend) trying to make sense of it. In theory if her heart is damaged, that could cause the tiredness and sleep issues and many other symptoms. Or it could be nothing. Who knows! I seriously think my kids are in a contest to see who can out do the other one and who can make my hair turn grey the fastest. Either way, the echo should clear up what is or isn't going on in there and will give us another piece to the puzzle. If there is an issue, the doctors know this is something that is effecting every muscle and it will help guide them in what to test for. If there is not an issue, we know that even though the weakness seems to be effecting everything, it is not severe enough to be effecting her heart. One piece at a time, Lord willing, we will figure out what is going on.

Out With the Old, In With the New

2011-09-25T21:47:00.007-05:00

The last few weeks have been difficult at best around here. We've had all of Leah's many appointments and countless tests, physical therapy twice a week, dance once a week and interviews for play therapists. We've had all the little pieces of information from each of these things to chew on and the lack of answers to process. Kate had pneumonia, sinus infections and bronchitis all at the same time. Glenn has had a rough month at work. Leah started first grade and with that came some adjustments to her schedule and day so that she doesn't get so warn out. Kate started school for the first time. I started teaching two days a week to help pay for the above list of things. Our van was hit while parked in addition to having 4 current recalls on it, our camera was destroyed, a 35 foot limb fell out of a tree barely missing our house, the suv has been having issues, the dryer broke, our bank account got hacked and drained. Things at the shop have been ever so busy and we've had some very stressful situations out there. We switched companies for our auto and home insurance and have had some major difficulties with that. Our medical insurance was changed and we had two weeks notice on it. Not only will our premiums go up significantly, our deductible will run from October to January and then reset. On top of that, we will have to pay for ALL of Leah's therapies at 100% up front until we meet our very high deductible. This means her therapies will come to a halt from October to January and even after January we will have to cut them back significantly.

This week felt like it hit a peak. Monday I spent the entire day, 6:00 am to 5:30 pm, taking Leah to appointments, with Kate in tow. I was tired, cranky and so incredibly rude to my kids. My tone and attitude was horrible and I just wanted to crawl in a hole. By Tuesday, all of the strong facade I had faded away and I was a big bumbling mess. I haven't cried that hard in a long time and while it was extremely embarrassing, it was also cleansing. As a mother, I feel like I have to keep my cool and keep everyone else strong and together. I tend to bottle stuff up and I don't let myself go "there" very often. I know better, but it is too easy to slip back into the old habit. I think part of me is afraid if I go "there" that I will not be able to get out of "there".

The last few months I feel like Satan has hammered us with temptation, stress and heart ache. I feel like he's attacked our kids, physically and emotionally, he's attacked our marriage and he's attacked our stuff (cars, house, bank account, etc). By Wednesday morning, when I found out about the bank account, all I could do was laugh. I laughed because it seemed so obvious he would hit whatever we had left. I laughed because whoever drained the account picked the wrong account, as it was on it's way to empty already. I laughed because I didn't know what else to do.

With the exception of our kids and marriage, every single one of these things are little things involving material possessions that really don't matter. Normally I could handle any of them, but it seemed to have become a daily thing. For a while it felt like we were a sponge being rung out everyday. Eventually we'd soak up some more moisture only to be rung out again the next day. By Tuesday, I felt more like a dry sponge. Every ringing out brought tearing and cracking and it seemed each time hurt worse. At small group that night, we took turns praying over each other.

Wednesday morning is when we discovered the bank account, but as the day went on, blessings surrounded us. Glenn had some breakthroughs at work. A dear friend brought lunch (and dinner) over for us and visited for several hours. We received not one, but two financial blessings that we did not expect at all. Both were from sources unaware of the situations we were going through and both had been written previously, but not delivered until Wednesday. Had they arrived when they were written, they would have been stolen with the rest of our money. God is always faithful and His timing always perfect.

Being able to see these blessings has renewed both of our spirits. Nothing significant has changed about any of these issues, but it was enough to put something back in the sponges. God's blessings surround us, even when they are difficult to see. The van was hit, but is still drivable and no one was injured. Our cars need repairs, but we have not one, but two cars. Our insurance is all messed up, but we have insurance and live some place with top notch health care. Our house was not damaged by the tree. Our camera was replaced. We have the ability to see doctors and therapists and to buy medicine. I could go on and on. We are truly blessed even in the worst of weeks. Thank you God for your blessings and for fresh eyes to see them! Please help me focus on the blessings more and the daily stuff less.

MDA Clinic

2011-09-09T22:45:00.004-05:00

Well, I guess I am getting good at being the squeaky wheel.

Sunday night, as is our family tradition, we attended the MDA Telethon. Since the year my brother, Jorge, was adopted, we have spent Labor Day weekend at the telethon. Leah has been to the telethon 6 out of 7 years of her life, including her first when she was barely 4 weeks old. She LOVES the telethon. If Labor Day is mentioned, she will ask about the telethon.

This year was no different and despite the telethon being much shorter, we packed up and headed down. We didn't plan to work at the telethon this year because we didn't know how the new format would effect or typical work and because Kate had been sick with bronchitis, sinus infections and pneumonia all week. Despite all this, the girls were not going to let us miss it. We ran around the studio and peek in on the set, ate lots of goodies and wreaked havoc for a few hours. As we were headed out the door to go home, I noticed a lady sitting by the door we were leaving out of. On her name tag I noticed "MDA Staff". I felt a tug inside and asked her about the specialist we were due to see in February. She informed us that they had just hired 2 new MD doctors and that she thought it was ridiculous to wait that long. She introduced us to another lady who was in charge of health services or something for MDA. She gave us her card and said to email her and she would get us in sooner. Tuesday morning I sent her an email and she called Tuesday night saying we had an appointment with the same specialist our February appointment was with, but for this Friday (today) at 1:00. WOW! We were all VERY excited and grateful for this much earlier appointment, but as it got closer, I think we all grew more nervous.

Leah, Glenn and I headed down to the appointment this afternoon. First off, we loved the doctor. He had the best bedside, a great sense of humor and was pretty thorough. He would say stuff to Leah like, "So these are your legs? Hmm...there's two of them." and the such to keep her laughing while examining her. He asked many, many questions about our family, history, Leah and ourselves. He didn't give much feedback during his evaluation, other than to say he didn't believe that she had facioscapulohumeral MD, which is what the last neurologist we saw thought she might have.

He then got into the nitty gritty. In short, he was not sure that she has MD, but was not sure that she didn't. He said their is a chance that she could be dealing with a different type of muscle disease or a metabolic disorder. He also is testing for Bethlem and Ullrich MD, as well as some liver disorders and DNA tests. He said that there is a good chance that we won't find a diagnosis or a "name" for what is going on. He said that each year they hope that they have gotten smarter, meaning there is a lot of unknowns still out there. He said that he is planning to continue to follow her in the future. He didn't feel that she needed to have a muscle biopsy yet. He did order an echo cardiogram and an EKG since muscle weakness all over will often effect the heart and lungs. We will schedule these soon. Some of the labs will be back in 1-2 weeks and some will take 6+ weeks.

When we asked about restrictions, he said he usually doesn't give his patients any, even in more severe cases. He believes in letting kids be kids. They know their bodies and how they feel better than we do. He did say that she needs to call the shots with physical activity. He told us that for any of the possibilities he could think of, we were doing everything he would recommend (physical therapy, equestrian therapy, procedures at school, etc.). The only thing he wanted to add was for us to see a child therapist. With Leah's tendency to extreme emotions, he wants to make sure she is well equipped to deal with pain, stress and change appropriately. He wants her to know how to communicate these things and be able to self soothe some. They gave some referrals and we will be looking into this soon. He acknowledged that she is having pain and some weakness, but felt like she/we could use some help in how to deal with it. He wants to see us again in February at our original appointment.

I can't say enough good things about the clinic. They were top notch from the time we came in until we left. We met with not only the doctor, but also the MDA health services person that got us in early, the nurse that I call weekly to see if there are any cancellations and a social worker that Leah now has access to anytime she needs anything. She thinks that is great since the social worker explained that she could get a note from the doctor saying that she needed less homework or more tv time. HA! And yes, she was joking! They were even nice enough to give Leah "magic cream" (numbing cream) for her lab draw. Only problem was that the tape they used to cover her arms hurt when they took it off. She was hysterical before they even got a needle out. The cream did work though, as she didn't even feel the poke. We then made our trip to the gift shop for a consolation/bribery prize. Then we met up with Jake and Amy, who were just finishing up with their appointment. We took a trip down to the trains to let the kids play and then made the journey home.

Glenn asked on the way home what I thought about the visit. Since he's walked through this with me, he is having some of the same struggles I've had in the past, especially with Kate. We both feel relieved that it isn't something horrifically obvious, but we don't really know where that leaves us. Is it real? Is it in our heads? Should we be happy it's not any worse? Upset that we still don't have an answer? Does she overreact? Do we under react? Are they missing something? There are a lot of thoughts swirling around in our heads.

A lot of this is just plain confusing. I hear the doctor say he's thinking she may not have MD, but he wants to continue following her and tests for some forms of it. I know how busy he is so if it wasn't a concern, why isn't he pushing us back to the general neurologist? Is Leah just seeking attention? When she is in "pain" all that she wants every single time is to go to her bed, where she cries herself to sleep. She has done this at home and elsewhere. I don't see how that is getting her attention. Everyone knows that she likes to fly under the radar, yet she has fully embraced the changes at school without any issue. She has no problem pulling out a cot in the middle of class when she is tired. If it didn't help her feel better, why would she do it and risk drawing attention to herself? And why would her behavior at home be so much more manageable when she takes her rests at school? I can tell when I pick her up if she has taken rests or not that day. It is making a HUGE difference. Why does the pain she feels seem so unbearable when it comes to her legs or a shot or even taking a bandaid off, but when she had her tonsils taken out she never once complained about pain or wanted her pain medicine? Is it because she can "see" some of the pains and not the others?

One of the biggest questions we have is regarding her strength. We notice a difference in her strength, endurance and ability. Her therapists who each work with her weekly feel there is an abnormality with it. The first neurologist noticed some weakness. The second saw it in some areas, but not too significantly all over. The doctor today said he noticed a mild weakness and a lot of loose tendons. Why the discrepancies? My uneducated guess is that it is hard to measure strength. They never use tools that would measure strength or grip. It is always pull my hand this way, push it that way, type tests. That being said, if you had several patients a day, how would you have a reference? How do you know what is "normal"? I don't know if I'm even making sense, but I don't know how some feel there is significant weakness and others don't really notice it. I plan on asking more about this at PT this week.

My basic feeling is blessed. While we would have LOVED to have more specific answers, I know that is out of my hands. Seeing as this is the second major time I've dealt with very similar issues dealing with the unknown with both of my kids, I think God is trying to teach me something. I realize more and more that my "unknowns" don't mean that HE doesn't know. More importantly, I don't always NEED to know. He does and that's what is most important. I am clinging to the few important things we learned.

1. So long as we don't push her past what she thinks she can do, we do not need to worry about causing damage. There is MUCH peace found in this!

2. Regardless of the specific name for what she is going through, we are doing everything that the doctor would be recommending following a diagnosis (except for the play therapy which we plan on getting in place ASAP). I can find peace in knowing there is nothing more I can do.

On top of that, we've got a great school with teachers and administrators that care deeply about our daughter. They are willing to let her make adjustments regardless of what we know or don't know. She is happy there and that makes us happy! I don't know that I will always feel this way, but for today this is enough to give me peace.

This Squeaky Wheel Got Greased

2011-07-13T21:39:00.006-05:00

Tuesday morning I called the MD clinic to see if they had any openings come up. The scheduler did not have any openings, but assured me that I was on the list to call when something did come up. Less than 5 hours later, my new best friend called to tell me that they just happened to have an opening come up in the schedule for this morning. Praise God! We had SO many people praying that we would get in sooner and it was very apparent that God answered this prayer. I was seriously giddy the rest of the day. I don't know that I've ever felt that type of excitement, literally to the point of being nauseous. Leah was less than thrilled that she would be missing her 3rd day of dance camp and was even less impressed to find out it was for a doctor's appointment. None the less, we were going.

Leah has definitely been sensing our anxiety the last few weeks and has asked a lot of questions regarding why she was going, did she have to and the like, usually accompanied by lots of tears. When we got to the clinic we found out we were actually seeing the MD specialist's coworker, who was more of a general pediatric neurologist. We were told that they had talked about Leah's case and that this visit was not to replace the appointment in February, but rather to tide us over. We went over all of Leah's history and she did a full physical exam. There was a lot of pushing and pulling of hands, feet, legs, head, etc. The doctor was very friendly and thorough. When she finished the exam, she explained that she noted some general weakness, but that it wasn't too bad.

The area she found the most muscle weakness in was surprising to us all. Her neck, chest, shoulders and upper arms seem to have been affected the most. This is obviously an odd area for weakness and lead the doctor to believe that we probably are dealing with some form of Muscular Dystrophy. In addition to the weakness, Leah's tone is low. I asked for clarification on this and learned that this means she is "loose, overly flexible and floppy". Her muscles, ligaments and tendons don't do their job holding stuff in it's place. It surprised me because one of the things we've been working hard on, both in PT and at home, is her tightness. Her Achilles tendons and the ligaments/tendons behind her knees are super tight. The doctor showed us examples of her low tone (her fingers when spread can go much further than normal, her ankles roll inward, etc) and explained that ligaments and tendons that are tight are probably trying to compensate for the low tone and weakness. They try to counteract each other's problems. While it's neat that the body tries to fix itself, this is one of those cases that one problem leads to the next.

She then noted that while her reflexes are spastic, they are not pathological (I think that's what she said at least). Basically when they check her reflexes (rubber hammer to the knee), her feet spasm and she has what looks like an exaggerated response. My understanding is that her reflexes are still in the normal range, showing that her issues are most likely not nerve related. This is good news, especially since it means we don't have to have the elctromyography done, for now. She showed us some ways to check for muscle spasms when Leah is in pain. If she were having true spasms, then they would further evaluate for nerve problems.

We also discussed my grandpa, who was discharged from the Navy in the 40's with a muscle disease that they called MD, but were never able to pinpoint what was going on. They obviously didn't have the same technology and capabilities as they do now, but I did have a whole stack of papers from my grandpa to take with us. I spent sometime talking with my dad tonight and apparently grandpa had severe weakness in his neck, chest and upper body, as well. He was a part of several research studies and they told him he wouldn't live past 30 due to the severity of it. Despite this prognosis, he lived into his 60's, when cancer eventually took him. He was very successful and often hid his pain and disability. He wound up being one of the scientists working on the Manhattan project and the atomic bomb. He was a fascinating character, just like my dad. Dad told me that often grandma had to physically push him out of bed because he couldn't lift his head off of his pillow. All of this info would have been great to have today and I plan on conference calling him during our next appointment. :)

The doctor also reviewed all of these reports and labs. It's a huge blessing to have that history and information. Based off of the physical findings, Leah's history and our family history, the doctor feels it is quite likely that Leah does have a form of MD. She said that her symptoms don't fit any of the classic, well known MD's completely and suspects it will be a rare form or even possibly a new form. Looking at my grandpa's life, my dad (who also has had similar symptoms as my grandpa did) and Leah as of today, the doctor assured us that her prognosis was very good.

We had some blood drawn for some testing that the doctor didn't really specify and should have results on those next week. I am not expecting any big answers from it though. She did order a sleep study since Leah's legs often bother her at night (common in muscle disease), she still snores and she is still so tired despite getting 12+ hours of sleep a night. There is a small chance that she is having trouble supporting her airway while she sleeps, thus causing the snoring, possible apnea and tiredness. This probably wont happen for a few months. In February we will see the MD doctor and he will probably order a muscle biopsy, as well as some more tests.

Until then, we are to let Leah set the pace. The goal is to get her to the point that she can A) know when her body is tired or is on the verge of being in pain and B) voice this appropriately (see: without tears, screaming, drama, fits, etc.). This is going to be VERY important because there isn't much we can do for the pain when it gets bad other than heat, tylenol and massaging the afflicted area. Also, by the time she is in pain, she has already possibly done damage. If we can get her to recognize how she feels before she is in pain we can hopefully avoid the pain and damage all together. It's going to be imperative that she feels comfortable talking to someone at school about this so that they can help us avoid the afternoon meltdowns, pain and exhaustion that we dealt with all last year. This may mean she has to leave early or come late when she's having trouble. She will probably need to modify her PE time too. Hopefully they will work with us!

In addition to teaching her to recognize these warnings, she instructed us to be very careful about extraneous activities or anything that might damage her muscles. Normally when you attempt to get stronger, you exercise causing your muscles to break down so they can grow back stronger. In MD, the muscles do not regrow properly or at all. If she does indeed have MD and works on building her strength, she could do irreversible damage to her muscles, wasting away what good muscle is still there. This fact alone was so worth the visit and pushing to get in before February. We have been working hard on her strength in therapy and it scares me to think we could have done damage without knowing it. Our focus will now be strictly working on stretching out those tight areas and working on skills like balancing.

Leah has begged us to take ballet for a long time now and has been so cute going to dance camp this week. She LOVES it. I asked the doctor about continuing with a dance class and she said she could try it this fall as long as it didn't cause more issues. Unless it causes her pain, we will let her enjoy every minute of it. I'd hate to hold off on it only to find out she can't do it later. We've been blessed with the opportunity to have her take lessons at a small studio that a friend from church owns. It couldn't be a better fit for Leah.

So for now we will wait for the blood work to get back, get in for a sleep study, let Leah call the shots and take it a day at a time. We know that Leah is God's child and that He holds her in His hands. He loves her more than we do and His goals, dreams and aspirations far outweigh anything we could wish for her. We are so thankful that we got in early and that we have some answers to grasp and wrestle with.

We did talk to Leah on the way home and explained some of what is going on. We need her to be aware, but still want to protect her. We also wanted to be certain to get a clear diagnosis so that we don't mislead her. We have avoided using terms like Muscular Dystrophy and disease, as she is aware of what those are. After all, she knows Uncle Jorge and has "worked" at the MDA telethon almost every year since she was born. For now she knows what to watch for, that God made her exactly how He wanted her and that we love her. For now, we think that's enough.

I know this post is long, but here are just a few ways we've seen God at work in this:
- We had so many praying for a sooner appointment. Our therapist on Monday told me to call the MD clinic everyday if that's what it took. It only took one day. :) With appointments being scheduled 8 months out, I can't help but think we weren't the only ones on the wait list, nor were we first on the list. Also, my brother Jorge's, who passed away from MD (he was adopted), doctor is now the Chief of the clinic. So many little connections.
- The fact that we are already established with two therapies is awesome. Through recommendations from friends, we found two amazing, Christian therapy centers that truly love Leah and care about her best interest. When I called to tell them we got a sooner appointment, they were as excited as I was and sharing the news with each other before we hung up. They truly care. Both of these places have wait lists, often as long as a year, for therapy.
- While our insurance is not that great, they cover most all of the testing under our specialist copay. I can't tell you what a blessing this has been to have this insurance, at THIS exact time, with all we are having done. So much easier than our other 80/20 policy.
- As soon as we know for sure what Leah is dealing with, we will have Kate tested too. Obviously we need to know, but especially since Kate has had lung and heart issues. MD affects all muscles, including the heart and lungs. Praise God that we have a great cardiologist and pulmonologist already should we need them again!

A New Phase of Specialists and Tests

2011-07-02T16:41:00.004-05:00

I am happy...no, giddy... to report that Kate's lungs seem to be responding to the medicine she is on right now. She's had a few flare ups recently, but not near as often nor severe. To say it's been a nice break would be a major understatement. God is good!

While I've got a TON of catching up to do, still, I've got a lot on my mind that I need to get off, so bear with me. Leah graduated from kindergarten and overall had a wonderful year. She had absolutely no trouble learning everything she needed to, including how to read (and well) and how to tie her shoes. Her behavior was, as always in public, perfect. She made it through the whole year without having her clip moved a single time. She loved school, but often threw fits about getting up and going. She was tired and the constant going definitely took a toll on her. She was in bed between 7:45 and 8:00 every night and slept until 7:15 every morning. Even with 11-12 hours of sleep, she was still exhausted. I think she had over 20 absences for the year.

While Leah was an angel at school, from the moment I picked her up it was crying, drama, fighting, etc. I do, indeed, appreciate her being so good for others, but sometimes it is hard to be the "safe place", getting to deal with all of the negative. We've definitely noticed a link to her tiredness and behavior, but it seems even when she gets enough sleep, she's still an emotional mess.

Leah's self-imposed drive to be good or perfect has caused us great concern. Several times this year I picked her up in the carpool line, only to have her break down in tears as she approached the van doors. Twice she was running a temperature of 104 degrees with strep throat and once she had thrown up on the playground earlier that morning. Despite being obviously sick, she didn't let on to the teacher because she didn't want to "cause trouble". We talked at length about this with her and her teachers, but it didn't seem to make much difference.

A handful of times I picked Leah up, she was VERY upset and complained that her leg/side/hip hurt really bad. I know that Leah can be a drama queen, but this was pretty intense pain. She wasn't able to get in her car seat without me pulling over to help. The first time she was pretty hysterical and I thought for sure it was appendicitis's or something. By the time I researched it and learned it was on the wrong side, she had cried herself to sleep on the couch. Every time that it has happened since it has been a sudden onset of horrible pain that causes her to lay in the same position (curled up, partly on her hands and knees, partly on her side). Every time it happens she cries herself to sleep and when she wakes, usually within a few hours, she is fine. She has been pretty adamant about the pain really being that bad. We usually give her motrin and a heating pad. Every time it happens, I debate whether or not to spend the hundreds of dollars to take her to the ER or wait and see. It happens about every 6 weeks and is gone as quick as it comes. I kept thinking I need to get her in to the doctor, but when it's not hurting her, we don't think much about it. I often wondered if they were just attention seeking fits, but it didn't add up. She's had them at school before and even places like grandma's house and they are always the same.

After a family trip to the beach at the start of Spring, we decided the emotional problems where causing us all to be miserable and decided to take her in for a check up. It had gotten to the point that it is impossible to have fun as a family if she were around and in one of her moods. We discussed with the pediatrician what was going on. On physical evaluation, he informed us that the spot where this pain had been was right above the left hip where the tendons, ligaments and muscles connect to the hip bone. While examining it, she was very sensitive in that area despite not having a recent flare up. He also commented that her tone was very high and it was interesting to watch her little feet spasm as he checked her reflexes. He sent us in for a hip x-ray and also ordered a psychological evaluation, physical therapy evaluation, developmental evaluation and a referral for a neurologist here in town. We started the process of setting these up, after having no success going through the school district, and learned quickly that there would be nothing quick about this process. For the developmental evaluation we were told they would contact us in 6-8 months and schedule an appointment at that time. The physical therapy evaluation was going to be at least 2 months out, the neurologist a month out and I haven't gotten very far in finding a psychologist on our plan that is reputable yet.

We've always known that Leah is little and petite, but have began to notice so much more. Some of that is probably hypersensitivity knowing there may be an issue there. More and more she asks Kate (who is 3 and 1/2 years younger) for help with tasks such as opening doors, opening water bottles, carrying stuff, etc. At a recent birthday party we attended, they had the children line up by size to have a go at the pinata. It was interesting watching all the 2-3 year old's take their swings and watching Leah struggle to get the stick moving and in the right direction. Despite being one of the older little kids on the street she is the only one still using training wheels. She has a very hard time riding her bike even with the assistance. She has become more and more of a homebody preferring to stay inside rather than play outside with the neighbor kids. Being that she is the oldest in kindergarten (we kept her back last year because of her size, the fact she still napped every day and the fact that she made the cut off by 3 days) it has given us a pretty good indicator of the differences there as well.

After finding out how long things were going to take, we researched an equestrian therapy center near our home. It is run by some wonderful Christian people and it wasn't a week later we had an evaluation. Leah has been riding for therapy once a week since. She LOVES going and it is awesome to watch how the games they play on horseback cause them to stretch and work without them even knowing it. It has been a Godsend. Not only do they work on physical issues, the therapy is created to help with emotions, confidence, self-esteem and behavior as well.

The next appointment that came up was her physical therapy evaluation. The therapist she works with, Mrs. Kelly, is great. Upon evaluation she noticed some severe muscle weakness all over, both core muscles and fine motor. There were things she picked up on that we never have, such as Leah's ankles not resting above her heels showing that she us unable to support the weight of her tiny frame. She made the comment that she hopes to get Leah's strength up to the level of a 4 or 5 year old (Leah will be 7 in a few weeks). Mrs. Kelly noticed several places that her strength was not at level and said it would be wise to start weekly PT there as well.

Some background with Leah.....She was born at 35 weeks after a difficult pregnancy. She spent 8 days in the NICU with IV's and a NG tube and had a rough time learning to feed by nipple, both bottle and breast. She was the type of baby that if she was awake, she was screaming. I'm not talking just fussy, I mean screaming. I don't know that I left the house with her much at all her first 6 months and was scared to death to leave her with a sitter. I knew what her screaming did to me and I couldn't imagine what it would do to someone else. At her 4 month check up, she hadn't gained a single ounce nor grown in length since her 2 month check up. Leah's muscle tone also seemed very poor, as the doctor described her as "limp". The doctor gave us a week to work on it before putting her in Texas Children's with a diagnosis of Failure to Thrive. During that week, we met with the lactation consultant a handful of times to make sure she was getting enough milk and everything seemed fine there, but she still wasn't growing. We spent the week before her first Christmas receiving every test imaginable by every specialist in the hospital, or so it seemed. In one day alone, I counted 45 doctors/nurses/students through our room. They never came up with any clear answer. I had seen my baby tortured enough and made the call to switch her to formula, just to be sure. Within a few months she started growing and getting stronger. The doctor that admitted us said she was sure she would be diagnosed with Muscular Dystrophy or something of that sort. She commented that she didn't know who all had been praying for our baby, but it obviously worked. Apparently the difference was pretty drastic.

Leah has always been small. Right now she's holding steady below the 10th percentile and that is the highest she's ever gotten. She's typically below the chart. Since the time she was 2 she has complained about her legs hurting. Usually this complaint comes when she is tired. A few times since her toddlerhood she would be awaken at night by these leg pains and the doctor chalked it up to growing pains. When Leah gets tired and her legs hurt, she will simply sit down, complain that they hurt and that's the end. You can't get her to get moving again after that (not even at Disney World). Leah also has had a spot on her back that is like a little crack at the top of the crease in her bottom. I've looked it up before and it is the spot that remains open in people with Spinal Bifida. Hers is closed but is still pretty deep and large.

Being that Leah was born at 35 weeks, I have always known there was a chance that she had some mild Cerebral Palsy and assumed that was why she was the way she was. At the end of the physical therapy evaluation, I asked the therapist if she thought that's what her diagnosis would wind up being and she simply said she needed to evaluate her further, but that she wouldn't call it that. We had two more evaluation/therapy sessions before the appointment with the neurologist rolled around.

We showed up for the neurologist appointment and could tell immediately that he wasn't a pediatric neurologist. There were many stroke victims and Leah was probably less that 1/10th of everyone else's age. We went over some history, which the doctor seemed uninterested in and then he had her push and pull his hands and arms in different directions. He noted that there was muscle weakness and he felt that she should be seen downtown at the children's hospital. He said he knew exactly what doctor he wanted us to see and that he would pull some strings to get us in soon. He also mentioned that she would need an electomyography done, but that you only want to do that once and he would let the office downtown do it. After a brief recess thanks to a very loud fire alarm blaring in our ears, we came back in and he had left some lab work he wanted ran. When I told the nurse I hadn't had a chance to ask him my list of questions, she seemed put out and went to find him. Along with my list of concerns, I tried asking what he thought might be going on and every question I had was answered with, "You can try and pin me down, but I'm not going to give you an answer" and a "nice guy" smirk. The only question he answered outright was that this was definitely not Cerebral Palsy. They set up a followup appointment for about 8 weeks later to discuss the results of the testing that would happen with the doctor downtown and when I asked if they thought we would be done that quickly, I was assured with a "Oh yeah" from the assistant.

I left feeling a little frustrated. The blood work he ordered had to be done in the morning, so I did exactly what I know NOT to do....Googled every single test he ordered. There were two testing for muscle disease and two for endocrine issues. The next morning we went and had the blood drawn which was quite unpleasant. I called the office after a week and was told the lab results had been in but the doctor hadn't had a chance to review them. I finally received a call back and the nurse said that Leah's thyroid was at the very low end of normal and that we should recheck it in 3 weeks. This wouldn't effect her this way though. Everything else was normal and it showed she doesn't have muscle disease. I asked, "So those two tests tested for ALL muscle disease?". "I guess so! That's what it says here." the nurse assured me. When I asked if we should still see the neurologist, she didn't know anything about that. She put me on hold and asked the doctor who did want us to see the neurologist still. When I asked about a referral she assured me it had been done, despite the fact she didn't know we needed to see one.

After weeks of checking with the hospital to see that they got the referral and waiting for it to be processed, we finally received an appointment date. The scheduler explained that we were needing to be seen in the Muscular Dystrophy clinic and that our appointment is for February 2012. I was in total shock. By now the fact that whatever we are dealing with was not just CP, as I had originally suspected had sunk in a bit, but the words MD stung a little. I asked if there was anything sooner with another doctor and was told that was the soonest and that this was the doctor we needed to see. I panicked and called my mom in tears. As many of you know, I had an adopted brother, Jorge, who had Duchene's MD and lost his battle 5 years ago. I've worked the MDA telethons for 2o years. I know what MD is and never suspected it or anything like it lived in my house. My dad's dad was diagnosed in the 40's with rare muscle disease that they called MD, but they didn't have the science that they do now to diagnosis it specifically.

I immediately began researching MD, neuromuscular doctors and the such and every search I did brought up this same doctor's name. I am still in awe that a medical center and city this size has one doctor in this speciality. In my searching I did find that Jorge's doctor is now the chief of the department and in learning that my mom wrote him a letter asking for advice. I contacted MDA and received the same name. I contacted friends and received the same name. Literally this is THE guy to go to. That is great, as I always want the best doctor and care for my for my family, but 8 months away? EEEEKKKK!

I called back to the neurologist we saw here and left a message stating I had questions for the doctor, if he could please call me back. Of course it was a nurse that called me back. She started the conversation with, "If you have more than 2 questions, he's not going to answer them. You'll have to make an appointment to come in and talk with him". In other words, "Give us more money". When I brought up my concerns with the appointment being so far away, she was shocked. She talked to the doctor and called back to say he didn't really have any "strings to pull" and if we were concerned in the meantime, we could come back in for an appointment. Hmmm, another $50 for you to tell us you don't know what to do? I think I'll skip out on that one. I also asked for clarification on the lab work. If the test showed she didn't have muscle disease why are they sending us to an MD clinic? The doctor said that the labs tested for the more common forms of muscular diseases, but that it would take a bucket load of blood to test for them all. The doctor downtown would know what specific tests to run for her.

In my panic, my mind wandered all over the place. How will this affect school and what should I tell them? What do I do to help with her pain now? Could she really have something like this and we didn't know? Do we keep doing therapy or drop it? What should I do proactively? I keep reminding myself of two things: 1) She is mine on loan. She belongs to God and he somehow or another loves her MORE than I do. 2) She is still the same Leah she was last year. However as a mom, your heart breaks and you want to do everything in your power to help your kiddos.

Friday I called back to the scheduler and asked if we could see a general neurologist at the same hospital to get some answers while we wait for the appointment. She explained that all referrals to this clinic go through the chief of the clinic who assigns them to the specialist they need to see. This means the chief also felt we needed to see this specific specialist. If we got a second referral, the chief would look at the symptoms and route her to him again. I tried to explain that I am certain that everyone wants their appointment sooner that the 8 month wait, but I didn't know what to do for Leah in the meantime. I don't think they realized that we have yet to receive a diagnosis. She assured me that she would call if there were any cancellations or openings and I assured her that we would drop everything and be there in 45 minutes regardless of the day or time.

Leah wound up with pink eye this week and Kate with an ear infection so we went to the pediatrician's office. It was good to bring him up to speed on what all was going on and get his opinion on the situation. The plan for now is if we don't get in on a cancellation in 3 weeks, we will see a general neurologist at a different hospital and keep our appointment with the specialist. The pediatrician did explain that Leah does have a formal diagnosis of myopathy, which simply means a muscle disease causing muscle weakness. At least we have that to use to try and get some help through the school system. I have been in constant prayer since, that an opening would come up soon. I plan to call every week and make sure they haven't had any cancellations come up. The squeaky wheel gets the grease, right?

Part of this dance in life has been trying to keep Leah from worrying or feeling like there is something "wrong" with her. She has been asking a lot of questions and is way to observant for her own good. At this point she enjoys playing games and riding horses and that's good enough for me. For now, we will let her set the tone for how much is too much and answer the questions as they come. Last night she woke up with a cramp behind her knee that had us all awake from the screaming. I just wish we knew what to do. Personally I struggle with what to do and how to feel. I know God will "grow" us through this all if we let him, but I struggle with when to be patient and wait 8 months for the appointment and when to push and stand up for my baby. It's hard to know what He's trying to teach. No one ever said motherhood was easy, but man, I sure underestimated it!

Wouldn't You Know It

2011-02-02T23:17:00.002-06:00

Well, the trip was GREAT, but exhausting. I failed my goal of trying to blog at night. Since we've been back we've dealt with more of Kate's issues and I haven't had time to post about the trip. I WILL do it. You'll just have to be patient with me. :) If you still check this blog, then you are more patient than I would be. Hopefully I'll get a day or two up in the next day or two.

Where It All Started

2011-01-26T00:29:00.004-06:00

We leave tomorrow for a short trip to Disneyland. I figure it's only fitting that I restart the blog since the whole thing began with a trip to Disneyland 4 and a half years ago. I won't make any promises, but the plan is to update the blog in the evenings so that we can record the trip. It's late, the house is clean, laundry is done, suitcases are packed, prescriptions are picked up (we are flying with 2 snotty nosed, ear aching girls tomorrow) and I'm too excited to sleep.

Here's (or more appropriately "h-ears") to new beginnings!

Plan B or is it T?

2010-04-18T23:24:00.003-05:00

This last week or two has been insane. We've had extra shifts at work, school functions, blue bonnet pictures, projects at work, Tooth Fairy visits, play dates, birthday parties, blown out tires and so much more. We've had at least 5 doctor's appointments for sinus infections, ear infections, wheezing, tonsillitis, pink eye and the such. Kate is on day 12 of a 20 day course of antibiotics. She's in her super manic steroid state, despite being off of them for a few days. She can spend hours crying hysterically and totally inconsolable and then be fine the next minute. It is horrible to watch what a monster she becomes and it makes the fire burning under me to get a diagnosis, burn a little hotter.

Since last weekend, I've been in touch with not only the executive director of the foundation, Michele, (who was sweet enough to answer my millions of questions, on a weekend, no less), but have also been talking with the nurse for a doctor who specializes in PCD. From what I have gathered between the two, there are about 5 pulmonologist that are part of a research group for PCD. They are located in St. Louis, Denver, Toronto, Seattle and a few other places. Not only do they specialize in PCD diagnosing and treatment, but they are also very experienced pulmonologists.

After speaking with Michele, she highly recommended we get in touch with the nurse and coordinator for the doctor in Denver. This doctor is apparently a great doctor and a really nice guy. It doesn't hurt that out of all the locations, Denver has the cheapest flights. It's the little details that count, right? Anyway, I spoke with his nurse on Monday evening, after emailing her Monday morning, and she was extremely patient and kind.

After reviewing Kate's history with the doctor, the initial feel was that she doesn't have "storybook" PCD. Basically she is not a case that they can assume will test positive based off of history alone. However, they do feel that she has enough issues that point to PCD that we need to get it checked out. While we would love to have an answer for Kate's issues, we really don't want her to have PCD. Ideally this group will help us to rule out PCD. In the nurses opinion, we should get a second opinion (other than our pulmonologist here) and if we are going to get a second opinion, why not go with someone specialized in it. I've spent the better part of the week collecting records to fax to Dr. "Denver"'s office. We are waiting on a few more pieces to be mailed from the hospital so that they can have everything they need.

The set up in Denver is two-fold. There is the clinical side of things which is run just like a normal doctor's office. Then there is the research side in which this group of doctors is studying children with PCD or other genetic airway diseases. They are studying the genetic makeup, diagnosing tools and treatment plans. Since this is not a study that is funded by drug companies, but rather the government, we feel that it is safe to look into it. According to the nurse, Kate will most likely qualify for the research program under a probable PCD diagnosis.

The plan is for the nurse and Dr. "Denver" to review all of her files once we get them faxed. Next they will put together a plan including any testing that they would like to do. They will break down which tests and care would be included in the research group and which ones fall under the clinical side. The research group is pretty specific about what it will and will not cover. The benefit to being in it is that it will cover testing that falls under it at no cost to us. The down side is the fact that it is so specific and it takes MUCH longer for results, as it is required double and tripled checked. Anything that is not covered under research, we will file with our personal insurance and will be responsible for copays, deductibles, etc.

Once they have a plan of what they would like to do, we will decide what we want done. The next step will be to get pre-authorizations and a "quote" from our insurance company. Once we decide what we want to do and how much it will cost, we will book a trip to Denver. Usually they can get appointments made for within a month of getting past the insurance hurdles. If we choose to do both clinical and research visits, we will need to be there about 3 days. In theory, we could fly in early the morning of our first appointment and spend 7 hours at the clinic for research that day. For the clinical visit, the next day, there will be sedation used and they prefer that patients don't fly out after that, so we would need to stay until the following day. My thought is there is no reason to fly up there and sit in clinic for 7 hours all in one day. We will probably make it a 4 day trip. It is very nice that they are willing to do it all in 2 days so that we are not stuck making trips back for each aspect of it.

Once testing and diagnosing is done and a treatment plan is made, there is a good chance that we will be going back quarterly for a while. It sounds like they are interested in getting to the bottom of Kate's issues, PCD or not, and in making a treatment plan for her. This is one thing that has irritated me the most about the doctor here. Call this issue whatever you would like, but do something, anything, just not nothing, to treat it. So far, everyone I have dealt with has been extremely kind, supportive, patient (you know I hit them with hundreds of questions right off the bat) and professional.

In my last post, I expressed my confusion on why our pulmonologist here wouldn't redo the testing. It made no sense to me at all. I have been reminded MANY times in the last week that "when God closes a door, He often opens a window". Maybe God was trying to make it clear that we were not in the right place and that He had something else in-store for us. I do know that I am SLOWLY, but surely learning to sit back and relax a little. Truth be told, as offended as I can sometimes get that these things are not in my hands, I am SO glad that they aren't.

Last Thursday, Kate was scheduled for a MRI on her arm to check out the lesion they found on her x-ray last year. Since she has a heart defect, they were planning to put her under general anesthesia instead of the normal protocol of a simple, oral anesthetic. On Wednesday afternoon, I got a call from Kate's pediatrician. He explained that the radiologist from downtown called and had been reviewing his cases for the next day. When he got to Kate's, he pulled up all of her past x-rays and really felt that what was showing was just a benign cyst in her bone marrow.

Since our pediatrician was the one who wanted this done, I followed his lead. He had never had a doctor call from downtown to cancel a case like this. He said the guy was 100% sure it was nothing and that he was more concerned about putting her under with the breathing tube and all, knowing that she had respiratory issues already. He explained that radiologists are typically non-committal because they are simply looking at a screen. They see what they see, but they can't ask, "does it hurt", "does it cause issues with the range of motion", etc. So typically, they give answers such as, "everything looks fine" or "get this checked". The radiologist recommended having another x-ray of her arm done to make sure that nothing had changed since the last one. Since this can be done whenever we want and it saves her having to be sedated, we were ecstatic. To be completely truthful, the fact that we didn't have to be leaving the house at 5 in the morning didn't hurt either.

When people have asked how the MRI went and I've explained why it was cancelled, I've gotten a lot of surprised expressions. I think that people thought I would be upset and still want it done. On one hand, it was already scheduled (and had been bumped up 2 months) and it would have given us an absolute answer. On the other hand, my constant prayer the last week has been that God will open doors that need to be opened and slam the ones that need to be closed. I am fully confident that He is doing that and am learning to appreciate sitting back and watching His plan unfold. There have been so many "coincidences" over the past few months, that I might have to make that be my next post.

Pink Slip

2010-04-11T01:08:00.004-05:00

On Friday the girls and I met with a group of friends for a play date at a ranch. The weather was perfect and the company was great. I had received a call from the pulmonologist's nurse before leaving for outing, informing me that the doctor had received all of my messages from the last 3 weeks and that she would make certain he called me back that day. She told me if I hadn't heard from him by 2:00 pm, I should call her so she could remind him. I am not sure it is my job to babysit this, but I was desperate to talk to him and set an alarm on my phone to remind me to call her so she could remind him. We were enjoy our time at the ranch and it was a good distraction from everything else. Apparently too good of a distraction. You guessed it....after waiting 3 weeks for a return call, I didn't hear my phone ring when he did call. Yep, par for the course. I quickly called the nurse who assured me he would call back. As we were packing up to leave, he did, indeed call again.

The conversation went about as bad as it could have. Well, I guess not AS bad as it could have, I didn't curse once and was able to keep my cool somehow. I'll try to be as basic is I can with it all.
At our last appointment the plan was to:

- Keep doing what we had been doing.
- Repeat the brushing/biopsy if we could get her well for a period of 8 weeks, probably in the spring or summer since there are less viral illnesses then.
- Do a CT scan of her lungs to check for permanent damage.

He started the conversation explaining that she didn't need a repeat brushing since PCD (ciliary issues) are so rare. I don't think that "rare" means there is no chance you have it. I believe that would be described as non-existent. He continued explaining that since Kate has been well for the past few weeks, she's showing that she is getting bigger and healthier. Yeah, maybe. Doesn't change the results from the last test though. Apparently the genetic screening we had done (against his advice because it is so inaccurate), coupled with the fact that she was healthy for a record amount of time, makes him 99% sure she doesn't have a cilia problem. While I'm no math whiz, 30-40% accuracy on a test + a brief period of health = 99% accuracy? There is no reason to redo the brushing since she is now doing better, there is a 99% chance that she doesn't have it and because there is always a risk in having anesthesia or procedures done.

Since she is having a flare up now, he wouldn't want to put her under anyway and even if we did it wouldn't be an accurate reading. I'm by NO means a specialist, but if she had 12 weeks to let the cilia grow back, I don't think that they would ALL die off from one little flare up. I agree that there might not be as many as without that flare up, but I do think it would at least show whether or not the are capable of regrowing. When I pressed him on whether or not we would ever redo the biopsy he said he would be willing to do it, if we really felt it was important, when she was healthy for over 8 weeks. When I explained that we had reached that point and when we called he kept saying no, he explained that it was because it wasn't during the summer. Apparently there are too many viruses that go around the rest of the seasons and that might cause us to have to reschedule if she got one. HUH? I'm sorry but when you have a kid who has been sick for an entire YEAR, you take what you can get! I don't care what season it is. If we have to reschedule 99 times, so be it. On top of that, she was sick the ENTIRE summer last year. We still haven't caught on that this kid follows NO trend? I clarified that this might take a while to get to that point (see: decades!) and he agreed that it would be fine.

His other point was that it isn't going to change the outcome or treatment. Agreed, she still may be sick often. She still may require a lot of medicine, maybe even the same ones she is on now. It does change the fact that we would know what treatment plan to follow (ie. Using percussive therapy, trying different asthma drugs if it is indeed asthma since hers aren't working, etc.). A diagnosis would also open the doors to get involved in research groups which might have new or different treatment plans. It also would give us a clearer picture of what to expect long term. The conversation was fairly long and the majority of it was him repeating the same thing over and over. He went back into the spiel about children who wheeze with viruses. I finally clarified that we would wait until she was healthy for 8 weeks, make sure that it was summer, call his nurse to set up the procedure and hope that she didn't get sick before that date came. Yep, that's the plan.

Needless to say, we will not be going back. I REALLY don't understand. What would the harm have been in just doing the biopsy a few weeks ago when she was well? Or now for that matter? There would be one of two options.

1) She still has no cilia - There would be a very small chance that they could ALL have been killed off by this one tiny flair up, but more than likely this would show they really don't grow back. We assume it is this, even if it means we rebrush her again when she is well again in the future just to be certain.
2) She has some cilia (even if some were killed off by the flare up) and it proves she is able to regrow them and it was just the fact that she was sick so much that gave us the results last time. I wouldn't even care if I got an "I told you so" out of it.

It seems pretty simple to me. I don't understand the hang up. If I had a patient's mother calling me who really wanted me to do a test (that would take 15 minutes) despite the fact I didn't think it was what was troubling her kid, I think I would eventually just do it. If it's what the doc thinks it is, at least it will shut the parent up. I mean really, what's the harm? Am I missing something? And putting off because it's not the right season? Really? What am I not seeing here?

I was SO angry and frustrated when I got off the phone. It hurts me so bad to see Kate sick. The fact that this call fell on the day that Kate started full out wheezing again was a little salt in the wound. It's been just long enough that we've been steroid free that we've gotten to see the real Kate. It makes the monster she is right now seem that much worse. It breaks my heart. We are right back at square one. Steroids, breathing treatments, ineffective antibiotics, horrible diaper rash, raging, manic episodes, sleepless nights and days and still no closer to any answers.

I was talking to my mom and she had some really good points. She wonders if maybe there is an issue of pride on the line. Maybe since we were blown off from the start and the doc had to eat his words when the biopsy came back the way it did, he felt threatened. She thinks he's afraid to do the biopsy again, for fear the results will be the same, showing he was incorrect. So instead of facing that, he just keeps putting us off. I sure hope that this isn't the case, although I can't think of any good reason he would keep putting us off. To let parents be this frustrated and more importantly a baby suffer because of pride? That's pretty low. I don't know if that is what we were dealing with or not, but I am not sticking around to find out. We will not be going back to him period. If it means we don't find out, so be it. We are no worse off than where we are now. Even if we did get an answer out of him, I need a doctor who sees patients more than one day a week, who is compassionate, who sticks to his plan, who returns phone calls in less than 3 weeks time (this was even the case when our pediatrician was trying to speak with him). We are going to have to have a better working relationship than that.

On a positive note, since I couldn't sleep last night (bitter much?) I went back through all the research groups that I found after Kate's initial brushing. I found an email address for one that I hadn't contacted before. At 1:35 am, I sent a message simply asking:

I have a 2 year old daughter that has had a horrible time with her health. We recently had a bronchoscopy with brushing done and the results showed that she had no cilia. I know that cilia can be damaged by illnesses, but can ciliary aplasia be caused by a virus or something (secondary) or is it always genetic (primary)?

In less than 12 hours, despite being on a weekend, I received a detailed, three paragraphed response from the executive director with more information in it than we have ever received. Not only did she explain different possibilities, but she offered to set us up with a PCD research site closest to us. Without knowing any more back story than what I shared above, she stated that if cilia is damaged because of infection, it is important to get to the bottom of why the infections are that extreme. She also made it very clear that biopsy results such as ours should be redone, several times if necessary and that if there has even been talk of PCD with a two year old, we should continue pursuing until we have a definite yes or no.

I felt like it was a gentle reminder that God is still in control and still holds Kate in His palms. This stranger directly answered the main two questions that torment me without me even having to ask them. I am not real sure where we go from here. I've wrote her back with more information and asked for research sites anywhere near us. At this point, I would drive to Maine if I had to (although I would probably wait until she is off the steroids ;) now that would be a rough drive!). While I was very angry and am still very frustrated, I am also hopeful for what might be. Please pray specifically that we are able to get into a research site so that we can have some definite answers.

History and a Big Stretch

2010-04-08T16:16:00.004-05:00

You know it's been a bit too long since you last blogged when: a) people quit asking you about it b) your web browser no longer auto-fills the website and c) you have no recollection of what you have or haven't blogged about (I don't think I ever did a Christmas post and maybe not even a Halloween post). Needless to say, it's been a while. I had a little talk with myself the other night and decided I either need to jump back on the blogging bandwagon or give it up all together. By no means am I saying that I will catch up or stay current on here, but I would like to give it a try because it makes me sad that I haven't kept "record" of our lives anywhere else and because I think I get a lot out of it. So here goes.

Have you ever gone to stretch and as you reach it feels SO good? You stretch a little further and....ahhhh, sweet relief. Being greedy you go for a little more and the next thing you know, you hurt.....badly. It's almost as if going from such a nice, gradual, good feeling to a bad one makes the pain a little worse.

The past few months have been good. Kate has been, dare I say, "healthy". "Healthy" for Kate still involves a lot of medicines, but it has been leaps and bounds above last year. She has had a few colds and bugs, but done very well with them all. I finally got brave and asked her doctor if he thought she had outgrown whatever was going on. In his opinion, whichever issue she really does have (cilia, asthma, etc.), she would not have gone from 13 rounds of oral steroids in 2009 to healthy in January 2010. Typically if a child does "outgrow" issues, they have less occurrences each year and they are less severe each time. They do not simply go away (without lots of prayer!). He feels like we were "given" a little break and are in the calm before the storm. As he put, "Historically, Kate likes to be, um....different. She'll probably wait until spring or summer when everyone else is great to show off again". Unfortunately, it's all too true.

We've taken advantage of this break and made 2 trips to San Antonio. The first was just the four of us and the second was with a bunch of my family. I will try to post pictures and stories from those soon. We also went to the rodeo and have had a few play dates and other outings. It's been nice to "test the waters". Since she has been doing so well, I spoke to our pediatrician about having another bronchoscopy and brushing done to recheck her cilia. It can take up to 2 months for them to regrow, so once we hit that point, I wanted it scheduled soon to get it out of the way before she got sick again. Our pedi called the pulmonologist who (after taking 2 weeks to get a hold of) said he "didn't want to do it since she is doing well now". Thoughtful fellow didn't want my sweet baby having to go through the anesthesia. Isn't that sweet?

Problem is:
1) We still have no answers.
2) Kate has to be well for 8+ weeks to get an accurate reading and she hasn't had one healthy stretch for that period of time (other than now) since she was born. Being that the pedi feels this healthy period is temporary, I have an incredible sense of urgency building up to get this done now.
3) She is scheduled for 2 tests requiring sedation to see what damage has been caused by the medicines she has been on. These will be tests will be done annually (with sedation) so long as she is on all these meds for the unknown problem. Not saving her much, huh?
4) This isn't all some big plan that I made. This was HIS plan and I'm not sure why he's changing everything now that we got to this point (which I NEVER thought we would even get too).

To me it seems pretty easy. Scope her, brush her and prove that she either a) has no cilia ever or b) has cilia that were damaged as a result of really bad viruses back to back, as well as asthma. If I knew it was b) I would LOVE to start putting her in Bible class and maybe get her in a class or program a few hours a week this next fall. However if she has no cilia, I would be a lot more cautious (and not waste my money) on these things. It would also give us some idea on what to plan for with the future. Although she may have issues regardless of the outcome, we would know a bit more about the severity. We could also apply to research groups who would be up to speed on treatment plans and information. I really feel like this doctor just doesn't know and is not really concerned.

I've tried, unsuccessfully, for over 2 weeks to get the pulmonologist to call me back. I've left many messages and talked to his nurse, who assures me that the note is on his desk. I realize that he is busy, but in my opinion, this is unacceptable. When our primary doctor can't get a hold of him for 2 weeks and neither can I, it makes it very difficult to have a "working" relationship. I am just about done with him. I have a call in today, requesting an appointment for Monday (the ONE day of the week he sees patients) so that I can go deal with this all in person. At the very least, he needs to sign off on her case so someone else (who cares) can pick it up. The pedi is also contacting the ENT who did Kate's ear tubes to see if she can do the brushing and scope.

As we've waited, trying to get this all sorted out, all has been fairly quiet on the health front. Or at least until last week. Last week, days before Easter, Kate woke up from nap running a temperature of 103.5. Sound familiar? They ran blood work, tested for strep and both flus and tried to get a urine specimen, unsuccessfully. The result? The Cadbury virus, allergic to Peeps, Bunny-itis, call it what you want. She had a bad virus. No other symptoms presented and the fever was gone a few days later. The timing was EXACTLY the same as last years virus. I joked with the doc that I would mark it on the calendar for three days before Easter next year and he laughed that two years in a row is funny, but if it happened a third, he would send us to a doctor for "um.... well.... really weird things".

Monday morning Leah woke up with pink eye and a sinus infection. By noon, it was obvious Kate had a sinus infection too, so we loaded up and headed back to the doctor. Leah had tonsillitis, sinus infection and pink eye (worst case I've ever seen) and Kate had ear infections and a sinus infection. Apparently Leah's tonsils were pretty big and this is the second time they have been huge in just a few months. We need to check them in a few weeks when she is well to see if they are still large. She's started snoring a lot a few months ago and they may need to be removed. Kate's ear infection is the first she's had since she had the tubes put in. Apparently the ear drum was very inflamed and irritated around the tube. The tube in her right ear was sitting cockeyed where the doc couldn't see through it. We aren't sure if it is trying to fall out or is just backed up with stuff. It wasn't draining though. We will have to check that out once she is well.

Tuesday Leah woke up with lots of gunk sealing her eyes shut. Even after a hot shower and removing all of the gunk, her eyes were SO swollen she couldn't open one of them. It was the size of a golf ball. By Tuesday night the swelling went down some. Kate's ear did finally drain a little too. By Wednesday night, Kate started the infamous "asthma cough". She coughed quite a bit during the night. So it was back to the doc today. Our doc is out of town so we've seen two different ones in the office and like them both. Sadly, for the first time in 12 weeks, we are back on oral steroids, once again. We are going to try a low dose for just 3 days and see what happens. If I can get a hold of the pulmonologist, I am still going to push for the brushing sooner than later since there should be at least SOME cilia there if she is capable of growing any. She isn't wheezing horribly, if at all, but her ear still looks bad, her nose is still really gunky and her cough sounds like it could be the start of trouble. Hopefully this will give us the upper hand.

On a positive note, the MRI on Kate's arm (for the lesion on her arm found on an xray last year was scheduled for June 1st, the first available appointment. We had a nightmare trying to get this scheduled (apparently they have to do general anesthesia and have a special anesthesiologist there because of the heart defect) and I was just happy to have a date set. They called and moved it up to next week. WOO HOO! It will be nice to get that off of our plates. That makes me even more certain we need to nip this cough in the bud this week.

We have been SO thankful for the hiatus. I've attempted to develop a new mind set during this break and while I am extremely frustrated with the pulmonologist and am terrified we are headed down the same path we were on last year, I am trying to learn to let go and let God. What better way to travel!

If I Don't Find Something to Laugh At.......

2010-02-16T21:45:00.003-06:00

I will cry and I may not stop. I'm stuck in the rut again. Fed up. Exhausted. Tired of fighting. Nothing left to fight with. So instead of being blue, I'm gonna have a laugh. It has been way too long since I posted some funnies, so without further ado: (Since it's been a while some of these may be repeats and close to a year old. Sorry!)

1. Last year at the zoo, my favorite animals had to have been the ones found by Leah, the pokeypine and the peehawk.

2. Leah to Mom "Do I have your ears? Cuz..... I love you!"

3. After an unfortunately timed bathtime poop by Kate, Leah was overheard yelling excitedly, "Mom, there's seaweed in the bathtub!".

4. Leah used to describe the clouds as mashed potatoes.

5. Most days Leah enjoys a good game of hide'n'seek. She likes to tease and be teased. I say usually because she is rather moody. On this particular day I hid behind a door, jumped out and yelled as she came in the room. I obviously got her good from the terror on her face. She then proceeded to inform me that "I was NOT treating others the way I wanted to be treated". When I informed her that, as a matter of fact, I DO like to be teased, she made it her personal mission to scare me every few minutes for the next 24 hours.

6. In my family saying "Oh my gosh" was not allowed and as such, this has become our rule too. Leah picked up this phrase from some neighbor kids and we had gotten on to her repeatedly for it. When discussing how well behaved she was she told me, "I used to say oh my gosh, but now I changed my life". Thank goodness she's seen the light!

7. "This tastes like dryer blankets"

8. In an all too common dramatic moment, Leah belted out, "I wish God didn't make me this way".

9. Leah has discovered that smothering Kate is most definitely one of Kate's pet peeves. She HATES to be held down. Like any good big sister, Leah has learned to capitalize on this. She has also rationed that she will not get in trouble for the torment because she is simply "trying to hug Kate". To combat this affection, we taught Kate to say, "STOP, sissy!". Leah now knows that once this is used, she gets one chance to stop before there is discipline. The other day I was in the middle of disciplining Kate and she stuck her hand in my face and said, "STOP, Mommy" followed by "no, no" while shaking her little pudgy index finger in my face. Whoa, we are in trouble!

10. While Daddy-O was talking in the car the other day, Leah told him "zip it, lock it, put it in your pocket".

11. Some of the funny things Kate now says at 21 months are:
a) "Oh MAN!!!"
b) "Holy cow!!!"
c) "Shoot!!!"
d) calling me by my first name
e) "I have boobers!" (boogers)
f) "Who's stinky? Sissy? Daddy?"
g) "It tickles" (used anytime she doesn't like something, ie. diaper change)

12. Leah plays Rock Band with Daddy-O quite often. Since I only let the kids listen to KSBJ, our local Christian radio station, or kids cd's, this has given her a taste of a whole different world of music. For weeks she kept asking for the Obama song in the car. I wasn't quite sure what she was wanting and kept pushing her off until we heard the "Obama" song at a restaurant one night. The chorus goes a little something like this:

"Sweet Ole' Obama......where the skies are so blue"

Another One Bites the Dust...

2010-02-12T20:49:00.004-06:00

With another possible diagnosis shot down, the list of possibilities is getting smaller. I called this morning and spoke to the pulmonologist's nurse. Kate's Cystic Fibrosis test came back normal, eliminating it from the list. That is good news and it's nice to get it off the list, as it is brought up as a possibility often. While I had her on the phone and in front of Kate's chart, I asked her to fax me all of the results that I didn't get yesterday.

After looking at the reports and talking with her, I understand a little bit better. Actually, I should say, I understand what they are saying, but it still doesn't make any sense to me. According to the pathology from her lung brushing, under the gram stain there were "rare epithelial cells present". The surgical report also stated that her bronchial and nasal specimens showed "large clumps of squamous cells, no cilia was successfully recovered". Literally in all the brushing they did, in many different areas, they couldn't come up with a single cilia. Primary Ciliary Dyskinesia (PCD), which is what they were testing for and referring to, refers to cilia that don't function properly or at all. They were attempting to get a good sample of Kate's cilia to check it's functioning and all it's parts. They were definitely not expecting them to be missing.

As best as I can tell with my Google degree, a lack of cilia altogether is called Ciliary Aplasia, which falls under a subset of PCD. PCD is very rare and apparently the subset of Ciliary Aplasia is very, very rare. I have yet to figure out if Ciliary Aplasia, or the lack of any cilia in a brushing, can be caused by illness.

I am starting to think that this is past Dr. Hi's range. He is supposed to be one of the "go to" guys when it comes to CF, but this ciliary stuff is a whole different deal. From my research, the University of North Carolina has a 6 million dollar research grant dedicated to PCD. They are looking to "register" or keep a database of all citizens with PCD. I think I will contact them and see if we can get a little information. Who knows? Maybe she will qualify for some research testing or treatment.

There are many reasons I am interested in getting to the bottom of the genetic possibility. Part of it is personal. I was a child who was always sick. I think I left the hospital after birth on antibiotics and was on them constantly until at least my second birthday. I've always been prone to respiratory bugs and have allergies so bad that I can't even make it through allergy testing without going into anaphylactic shock. As an adult, I've actually been hospitalized for ear infections......twice...and sinus infections once! I mean seriously, who does that? I've had pneumonia at least a dozen times, tonsillitis, bronchitis and more sinus infections than I do years on my life. I've gone through sinus surgery and a tonsillectomy. I am and have been on many of the same medicines that Kate is on. This all leads me to think that there is a real likely chance that it is the genetic form.

What difference does it make? Maybe none. I do personally feel that it would be nice to know for future generations,especially since early diagnosis can make a big difference in prognosis. Plus, I would like to hope that it will save future kiddos from having to be on so many unnecessary medicines and save parents from the constant chase to find a diagnosis. Also since it effects things like fertility, it would be nice for the kids to have a heads up on that. If you haven't figured out that I am the type that WANTS TO KNOW, welcome to your first blog post. You haven't read much. LOL!

Kate has been really snotty and running a fever the last few days, so we slipped into the pediatrician's office (Dr. McP) right at closing tonight. I gave him copies of ALL of her test results from this week so that he could do some research between now and Thursday, when we will see him to make a plan. He was definitely interested in getting the copies so he could read up on it this weekend.

I apologize for my never ending, medical ramblings. I'm starting to get bored with it too. Writing it out helps me understand it better, remember what was said, process it and often brings up other questions I need to ask. It's kind of my public venting.

Booger Suckers and Damaged Goods

2010-02-11T22:13:00.004-06:00

Today was the day of results. We headed down to the medical center, early this morning, in horrible weather. It was rainy, cold and a huge mess. Even the HOV lane was a mess. We made into our first appointment, immunology, at 8:55 am. We checked in for our 9:00 appointment and got Kate's vitals checked. She loves that she has graduated from the baby scale to the scale she can stand on. At her last GI appointment her stats showed she had lost about half a pound since September of last year. That was confirmed again today. She is definitely slacking in the weight department at 23 1/2 to 24 pounds. To not have gained any in 6 months, especially at this age, is less than ideal. I think she is in the 14th percentile for weight now. This is despite her finally taking to cow's milk AND having Pediasure in the mornings. Kate impressed the nurse, asking for "pressure" and "temperature" after getting her height and weight. She's becoming all to accustom to this stuff.

We made our way back to our room, where we waited for 45 minutes. Finally the fellow, that is currently training with Dr. Ha, came in. He went over all the lab results from the draw on her procedure day. Long story short, they were all normal. Her IGG was 518, IGA was 47.1 and IGM was 97.4. Those are all in normal range. He basically said she was normal from an immunological stance and that he would be back in with Dr. Ha soon. We waited another 30 minutes. At this point it was 10:30 and we had tentatively set an appointment with pulmonology at 10:00. Dr. Hi was seeing us today to save us an extra trip down, since he normally only sees patients on Mondays. We were supposed to page him when we were ready. I left the room to see if they could page him and ask if we could see him in the afternoon, as we had an 11 o'clock lab appointment for a sweat test to rule out Cystic Fibrosis. I knew this couldn't be bumped because 11 is their last appointment for the day and I really didn't want to return a different day for one little test.

As I was talking to the nurse, I saw Dr. Ha (pumonologist) walking towards our room. He came on in and talked with us. He started out by saying that there wasn't a GI issue, there wasn't an immunology issue and that he really felt like she was a child who "wheezes with viruses". I seriously had to restrain myself from A) laughing B) hitting him or C) walking out. It seriously felt like ground hog's day. He finished with the whole "wheezes with viruses" spiel and then referenced the biopsies or "brushing" they took of her lungs. He commented that he was VERY surprised that her cells were ALL damaged. He continued that this can fit in with "wheezes with viruses" or WWV (yes, I made that up.....or more appropriately IDHAFCWYCISATT....I don't have a freaking clue why your child is sick all the time) because some of those kids get so many viruses it can damage the cells of their lungs.

While we were at the appointment, I felt like I had a great grasp on all of the knowledge we did get. Trying to explain to Daddy-O though, I learned that I didn't have as many answers as I needed and Dr. Hi can be VERY confusing at times. I'll try my best. If anyone KNOWS what I'm trying to talk about, feel free to correct me in the comments. I asked for more information about the brushing and he explained that the cells that the cilia sit on can be damaged by lung infections, viral and bacterial, and the body normally repairs them. They can also be damaged by genetics (Primary Ciliary Dyskinesia or PCD). I asked what was so surprising about Kate's results and he explained that usually they see some damaged cells, but not ALL damaged cells. Now, I am not sure what that would indicate, but my gut says that means she has had a LOT of frequent chest infections, more than the normal WWV type of kid or there is something else going on. I didn't get a name for the actual damaged cells, a final lab report or any indication as to whether or not the cilia are truly damaged, and if so what part of them, or if they are missing all together. I will call tomorrow and try to get more info so that I can email our pediatrician. This will give him a chance to read up on it before we see him next week.

Basically since the cells are damaged and will continue to be until she can be well for a long period of time or find a new set of genes (no, that's not really an option), the treatment is the same. They drew labs for the gene test today, but it has a 30% accuracy. If it comes back saying it's genetic, then it is and we know we are in for the long haul. If it is negative, she still could have PCD, but we will have to wait until she is healthy for a while and redo the brushing. If we see that after being well they are still damaged, we know that it's permanent. So until she gets well for a while, we will be treating as PCD (unless her pediatrician tells us different). Confused yet? I am!

So what's the treatment..... pretty much nothing! There are a few things we can do and for those of you we know personally, YOU can help us with some of these!!! We need to do the following according to Dr. Hi's plan:

- Keep her away from anyone who is sick.

- Avoid Bible class, public playgrounds, childcare until AT LEAST May, if she is well some of the time before then.

- Absolutely no sharing drinks, food, utensils or anything else that enters her mouth.

- Save kisses for the top of her head only. No more chubby cheek kisses or open mouth, slobbery kisses. :(

- Wash hands before interacting with Kate.

- Remind her to keep things (ie. toys, colors, etc.) out of her mouth.

The fact that Leah is in school is actually beneficial. This gives Kate an opportunity to pick up some viruses, that Leah carries home, in a very light, watered down form. If Leah were sick with them, then Kate would get them full force, but even without catching these viruses, Leah is bringing them home. Her immune system is strong enough to fight them off, but it gives Kate's a chance to experience them. This is VERY different than exposing Kate to someone who is sick. Exposing her to a sick person directly, gives her the full blown virus. The little bit Leah drags in is just enough to give Kate's immune system a taste of it. Unfortunately that little bit is often enough to sink Kate. The good part is, it will save her from having NO exposure built up once we do expose her to the real world. It is helping her system learn how to take on the little things.

In addition to this, we are to continue treating symptoms, which includes oral steroids with flare ups. When I asked about PCD, in the genetic sense, Dr. Hi said, it was unlikely, that most kids have bad ear infections, have to have tubes put in and have sinus infections a lot. Three for three on that list. Then when I told him I had read on some PCD forums that some people recommend doing percussive therapy, similar to cystic fibrosis treatment, he said that most of the time PCD effects the sinuses and ears, but sometimes the lungs. Yep, got it. He continued that percussive therapy would only be useful if she was getting lung damage. I guess that all of her lung cells being damaged doesn't count? I'm not trying to be a sarcastic, I really just don't know. He said that we would do a CT scan of her lungs this spring to check the damage, but he really wanted her "well" for it. I did talk him into lowering her daily steroid since it doesn't seem to be helping at all anyway.

By the time we wrapped up with him, it was 11:15 and I was frightened that the lab wouldn't take us. I left my cell number at the nurse's station and told them to call me and let me know if Dr. Ha wanted to see us or not. We rushed down to the lab and got in pretty quickly. The sweat test basically involved them cleaning Kate's legs, applying some chemicals, I think, and then shocking her skin with electrodes for 5 minutes. She was less than thrilled and kept kicking the lab tech. Once the 5 minutes was up, they remove the electrodes and place a piece of gauze over the sight. They place plastic wrap over that to create a sterile pocket and then tape it all up. The poor girl had tape from her ankles to her knees on both legs. You then wait 30 minutes for the gauze to collect sweat. We ran to get a quick lunch while we waited. Just as we were wrapping up, they tracked us down and said our time was up. We went back and had it all removed. They drew the rest of the blood work while we were there too.

Then it was back upstairs, since I hadn't received a phone call from Dr. Ha's office yet. We told them who we were and headed back to the same room. Forty-five more minutes passed before I went out and asked if she REALLY needed to see us. After all, I had already received copies of all the labs we were there to get results for. Finally she came in and went through each and every lab Kate's had drawn, what they mean and what normal ranges are. I appreciate her thoroughness, but I was SO ready to be home and poor Kate was done! She didn't really have anything different to say from the fellow. We will go back in a year, unless the pedi thinks we need to be seen sooner. We will probably do allergy testing at 3 years old. Other than that, we are cleared from their office!

So now we've dropped 2 docs, 1 med and lowered one. That's some progress! I was hoping for giant steps and we are getting baby steps, but at least we are moving. While I don't know that all of our questions are answered, we have all the pieces to take to the pediatrician, Dr. McP, next Thursday. Hopefully he will be able to piece them together and get us on a good plan.

Some of the other things I've read about regarding PCD are that we need to treat aggressively at first potential of infection (cough, sniffle, etc). Many groups also recommend doing quarterly swabs to check for harboring bacteria. PCD patients are very prone to super bugs (big bad viruses) that can lie undetected in the lungs and be a real problem to treat. To be honest, I'm not even sure what type of doctor PCD care would fall under. I've also read that percussive therapy and suctioning can be helpful. It is interesting how much these little "hairs" effect too. Fifty percent of PCD patients have all of their organs reversed, like a mirror image. Apparently cilia control the movement and placement of the organs in the embryonic state. They also assist the egg in moving through the fallopian tubes. They are also the tail on sperm. Because of this, there is a high rate of infertility associated with PCD, especially with men.

After seeing Kate's nose today, the doctor did recommend that I get a good aspirator. We've used saline and a bulb syringe in the past, as well as Q-Tips. We refer to Kate's boogers as "bungee boogers". Those things are seriously strong. I can catch one on a Q-Tip, pull and have it way out, only for it to snap back in to the abyss. Too much info, I know. I went to find a better aspirator and spoiled myself. There was one that requires you to provide the suction via a straw. I went all out and got the battery operated one. I'm not so keen on sucking on a straw to remove the bungee boogers from my daughter's nose. Call me crazy! We used it tonight, as she is horribly gunky, and her boogies are almost to thick for it. If any of you have used one of these and have advice, I'd love to hear it. I do LOVE the concept, but am not 100% sure it's going to work.

At this point in time, a part of me hopes that the genetic panel comes back showing that it is PCD. By no mean do I want there to be something wrong, but this way we have a clear answer, diagnosis and know what to deal with. The other side of me hopes that it is negative so that there is a chance it will go away. More than anything, I hope and pray that God protects her, continues to keep her as healthy as possible and that she will thrive, inside and out.

pH Probe Results

2010-02-05T00:49:00.002-06:00

Overall, the pH probe was not too bad. Kate didn't see to mind the tube too much. I do think using the backpack was a life saver! She never once messed with the tube. Our biggest issue with the whole ordeal was keeping the tube from tangling around her while she tossed and turned in her sleep. I need to contact the clinic and advise them to give instructions on that before someone does strangle themselves in their sleep. When we went to have it removed, the removal of the tape on her face and neck was plenty enough distraction. I am not sure she even realized they were taking the tube out. She often tells us that her "boo boo's are all gone gone" and will point to her nose and iv site. She is such a good kid!

We met with the GI specialist, Dr. V, on Wednesday to follow up on the EGD scope and get the results from the biopsies and pH probe. Overall, everything looked good. There were no signs of severe reflux from the biopsies. The pH probe that she wore for 24 hours came back mostly normal. They consider anything below a pH level of 4.0, that doesn't bounce back up within 2 minutes (I think), to be reflux. It is normal to have the pH level drop below 4, it just shouldn't stay there for long.

Kate only had two episodes of "reflux" lasting longer than 2 minutes. One was just over 2 minutes and the second was for 13 minutes. While 13 minutes is a longer than normal time to be in "reflux", the doctor didn't seem to concerned. He doesn't want to do something drastic (ie. surgery) based off of one episode that didn't follow the rest of the results. There is a chance it could have been a mistake (ie. acid from drinking, eating, etc.). Over the 24 hour period, her esophagus was in "reflux" less than 3% of the time. I don't really know what normal is, but I got the impression this was fairly low. The results, coupled with the fact that her lungs have had NO improvement while being on high doses of reflux medicine, leads Dr. V to believe we are barking up the wrong tree. When I mentioned the possible cilia scenario, he seemed to think that it was much more likely.

He did go ahead and switch her to from Prevacid to Nexium for 12 weeks, just to see if she got any relief. He said if she didn't, it was most likely not reflux causing her issues. If it does help, then great! I was very pleased to hear these results for many reasons.

1. NO fundoplication, which is a pretty involved surgery that would be the next step if reflux was present.

2. Having the diagnosis on her file of reflux or GERD, as well as lung issues, causes everyone to assume she is aspirating, causing all of the lung problems. Now that we know that reflux is most likely not playing a role, it takes away that assumption.

3. Hopefully in 12 weeks, we will be 2 daily medications less and 1 specialist less!

My reason for agreeing to the scope, probe and biopsies in the first place, was to eliminate the guessing. If the medicines were not helping her lungs because her reflux was so severe, we needed to know that and do the surgery. If she wasn't having trouble with reflux, I don't want her on all of the medicine for reflux. I am very glad to have this done and to be able to remove that piece of the puzzle!

We go back to the medical center Thursday to follow up with AI (Allergy and Immunology) on the labs that were drawn, as well as with the pulmonologist. We will also go ahead and get her sweat test done while we are there to check for cystic fibrosis. We will also go ahead and draw labs for the test to see if the cilia issue is genetic (primary) or caused by the chronic infections (secondary). The following week we will meet with her new pediatrician to go over all of the news and make a game plan. Hopefully by the end of February, we will have all the answers we need to move forward with a plan that works! If I don't update (maybe even something fun?) before Thursday, I will try my best to get an update done then.

Pokes, Pinches and Probes

2010-01-28T22:29:00.008-06:00

I am flat out exhausted, but I promised to post so here we go. I guess I will start at the top, since that's where the docs did. We arrived this morning at the Medical Center at 8:00, right on time. We checked in and were one of two families in the GI suite. Kate wasted no time charming the nurses. We were called back to pre-op where she continued soaking up all the attention. She put on a great show, talking up a storm and milking every single staff member for attention, stickers and coloring books. She got a little cranky wanting something to eat and drink, but was fairly easily distracted.

We met with the anesthesiologist, the GI specialist and the pulmonoligist to go over what all was going to be done. They let me go into the procedure room with Kate (what a great surprise), while Daddy-O stayed in the waiting room. Kate did so good and wasn't even anxious until she saw all of the equipment. They let me sit and hold her on the stretcher while they gave her gas. It was plenty strong enough, as the nurse and I had to turn our heads. She fought it for a few seconds, which seemed like a really long time, and then started getting sleepy. I kissed her forehead, told her I loved her and laid her on the stretcher. Daddy-O and I raced down stairs to get a bite to eat and made it back upstairs just in time for the GI doctor, who was first on deck, to be coming out.

By this time we were the only ones in the waiting room, a great improvement from the day surgery center, where there are people everywhere. Dr. V explained that he didn't see anything anatomically wrong with her digestive system. Everything was in it's place and there wasn't visible signs of inflammation. He said this is typical considering the dosing and length of time she has been on Prevacid. He took somewhere around 6 biopsies from her stomach, intestine and esophagus. Biopsies of the tissue will show how much covered up damage is really there. We should have the results from those and the pH probe at our follow up next Wednesday.

In between the doctors, a lab tech drew a bunch of blood for the immunologist, so that a) we didn't have to stick her while she was awake and b) we would have results for it all before our appointment in two weeks. That's a think ahead type of plan and I LIKE IT!!!! They were even able to get the blood from her IV (which they put in on the first try) so she didn't have to have another stick.

By the time we finished talking with him, Dr. H, the pulmonologist was done with his procedures. He explained that he too, found nothing wrong with her anatomy. Her airway was definitely inflamed and had a lot of mucous in it, but nothing he didn't expect with the upper respiratory virus she has right now. He explained that they took a washing of her lungs, where they wash the inside of her lung with saline and then pull it all back out and test the saline for different things. They also did a brushing of her lung, where they insert a small brush to collect some of the cells from the lung. They also did a brushing of her nose.

Dr. H had mentioned these tests at her last appointment, but didn't feel like they were necessary. I figured since she was going to be out they may as well take care of ALL of the what ifs and save us having to go through this again. I pushed with his nurse and he agreed to do it. The fellow that was with Dr. H walked the brushing specimens straight to the lab as soon as they had them. They looked at the samples to see if they had a good sample of her cilia. Cilia are the hair like structures in your ears, nose, throat and lungs that beat in specific rhythms to knock out germs, allergens, etc. At first look, there was no movement. They then realized they had collected them in the wrong solution. They did another brushing of each.

While they were taking the other sample to the lab, Dr. H explained that he still felt that she was one of those kids who just gets sick easy and gets wheezy with simple viruses. He said we would know more at the follow up in the next week or two, when all of the biopsies were back. About three minutes later, he and the fellow returned with different news. The new brushed cells that the fellow took to the lab where not the cells that they expected to see. I'll try to explain as best as I understand and if anyone knows better, feel free to correct me.

The lining of your lungs has a layer of water that houses your cilia. Outside of that layer is a layer of mucous. Germs, allergens, etc. enter your airway and get trapped in the mucous around your lungs. Then the cilia beat in rhythm to push out the mucous containing the germs, etc. preventing them from entering your lungs. The cilia can be damaged. This is what Kate's looked like. There are two ways that we discussed that this can happen.

#1 There are genetic problems that can cause the cilia not to function properly. This would lead to them being permanently damaged and unable to beat off germs effectively, allowing the patient to get sick very easily.

#2 The cilia can be damaged by a virus or infection. After the infection subsides, the cilia repair and become functional again. If they don't have time to repair before the next illness, they are just re-injured and don't beat off the germs they should. It is kind of like if you have a cut on your finger. The cells in the cut look different than your skin because they are damaged. The cut is trying to heal itself back to the "skin" stage, but every time you bump it or stretch it, you re-injure it.

Kate's cilia or the cells that were there instead, are definitely in the injured stage. The doctor made the comment that the cells were not what they should be and were damaged by the constant chest infections. I think I actually said, "AHA, so I'm not crazy!!" out loud. :) The question is which scenario is the cause. Both are very likely, both make a lot of sense. There is a blood test that can be done to see if it is genetic. The test, however, isn't always accurate. If it shows that it is genetic, then we will have an answer. If it shows negative, it doesn't necessarily mean that it isn't genetic, as it has a 25-40% accuracy rate with false negatives. The only way to tell if it is constant infections that is causing the damage is to do another brushing when she is "well". As the doctor said, since she is not ever "well" for long enough for them to repair, it might be a while before we get to that point. If the cilia were present and properly functioning when she is well, we would know that they are capable of repairing and functioning. I am not sure what the treatment for either situation involves or if there even is treatment for it. We will know a lot more once we get all of the biopsies back and go in for the follow up appointment. We will go ahead and draw labs for the genetic testing at her next appointment. This way if it is genetic (which with my allergy, asthma, ENT issues it very likely is) we will know for sure that it is. I figure if nothing else it keeps the pediatrician, Dr. McP, from stepping on toes again. You KNOW he would be ordering it the same day he saw the report.

During the second meeting with Dr. H, the GI doctor was placing Kate's pH probe. Shortly after, we were called back to recovery. I was pleased to see we were in a private room instead of the huge, open, "hi I'm your recovery neighbor. don't mind me puking on you" recovery room we were in last time. The nurses all LOVED Kate and continued to show her extra attention. She had a little trouble staying warm and keeping her oxygen saturation up. She is a lot like her momma and doesn't like to wake up after anesthesia. I will take that over the nausea, vomiting scene any day of the week. She did NOT want to open her eyes, but was coherent enough to nod and shake her head appropriately when we asked questions. "Do you want a drink?" got a big yes and "Are you ready to get up?" got a big no!

Eventually, she popped her eyes open, asked about her sissy and was ready to roll. She had some juice and sat there talking and carrying on like nothing ever happened. She checked her ankle to make sure no one had stolen her ID bracelet. She barely even noticed that she had both arms in splints, connected to one another across her shoulders, and a tube stuck in her nose. The nurse recommend that she keep the arm splints on until we take the probe out tomorrow. After explaining to Kate once that if she pulled on the tape or the tube, she would have a boo boo, she left it alone. She hasn't messed with it since, other than to point and tell me when she has a "boober".
She did great on the ride home, staying awake, singing and dancing to her video, but insisted on having a baggie so that she could pretend to throw up. She heard that was what it was for and she was not going to miss out. Strange kid! When we got home, she followed me over to the neighbor's house to pick up Leah's stuff. You seriously couldn't tell the poor kid had just been through all of the probes and poking she had. She is SUCH a trooper. She immediately wanted to eat when we got home and did just that.
She ate 2 Popsicles, goldfish crackers, 6 Ritz crackers, some juice and much to my dismay, 2 glasses of chocolate milk. She wanted a third Popsicle, but I cut her off. I put her down for a nap with the restraints on. I figure it is not worth repeating the probe if she pulls it out in her sleep. I know that if I tried to keep those things on the full 24 hours (think crucifix position) she would come undone. I have to be right with her every second she's awake anyway to make sure she doesn't get tangled up and to record every burp, hiccup, sneeze, cough, cry, time she lays down, squats, stands up, drinks or eats, so I figure it's safe enough to leave them off while she's awake. As soon as she woke up from nap, she asked for hot cocoa and some crackers.

The tube she has goes down her throat into the lower part of her esophagus. It measures how often acid hits it and what level of acidity it is. It is connected to a computer that I have to hit buttons on every time she engages in one of the above activities. I also have to keep a written log of it all that coordinates with the time on the box. It is seriously, far worse than hitting the button in the hatch every 108 minutes on LOST. Much, much worse. Have you ever tried to notice, let alone record, every time a very active 21 month old bends over, lays down, burps, etc. while trying to chase no more than 18 inches after her so the tube doesn't get pulled out? Wheh! The device came with a single strap to wear over her shoulder, but it is way too long and just gets in the way. I put the device in a little back pack for her to wear and it is perfect. It keeps the tube out of her arm's way and makes it where I'm not having to chase her with her "leash".

Tonight she's been a little more fussy. I can't say I blame her. Some of it is from the anesthesia, some from the Morphine wearing off. Some of it is because they pumped her so full of air....and chocolate milk. She has been through SO much in 21 months and quite a lot of it this week. She is such an amazing little girl and tolerates things so very well. I think I would be incredibly cranky just having that silly tape on my face, even without the tube down my throat. She's spiked a fever tonight and is having a lot of trouble with wheezing. Both are to be expected with as much irritation as her airway got today. I put her to bed in our bed and came in to check on her a few minutes later, only to find the tube wrapped around her neck, fairly tightly. She was okay, but it scared me pretty bad. Daddy-O had the idea to run the tube down through her splint so now when she flops around she just ties up her torso. Needless to say, she will be bunking with us tonight. I'm sure we will all be exhausted tomorrow. Kate and I will head back in tomorrow to have the tube removed. They said I could do it myself, but since I have to make the trip in to return the equipment, I figure I let them have the honors. If it would have saved me the drive, I probably would have done it!

So the game plan is to follow up with GI next week. I think this is important since we know her lungs have issues, but are not sure on the GI stuff. By the time we make it to the pulmonoligist, at the end of the week, we will know whether or not to rule out reflux. After we follow up with him, we will see the immunologist to get her lab results and then finish out with our pediatrician to make a final plan. It is so nice to have a little piece of the puzzle here and there. I am excited to watch it all come together and get my baby well!

Thank you God for a smooth day today, for watching over us all and for answers. Thank you for the best doctors and nurses, for answers and guidance. Thank you for friends and family that would take time out of their busy schedules to lift us up in prayer!

Amen

The Big Day

2010-01-27T21:05:00.003-06:00

So tomorrow is "D" day, diagnostics day, that is. Kate is all set for her EGD scope, pH probe, bronchoscope and cilia biopsy, as well as a bunch of lab work. Last week she and Leah came down with this nasty respiratory stuff that everyone has right now. It's sort of croupy, sort of sinus infection like and very stubborn. We put Kate on oral steroids over the weekend, to try and prevent a bad flair up, despite the fact she wasn't wheezing yet. I say yet because she was definitely headed that way. I had wondered about putting her on them ahead of time to open things up, but didn't know how soon to pull her off of them to guarantee they wouldn't effect her tests. We went to Dr. McP on Friday and he said to put her on them for a few days (Fri-Sun) before I mentioned my idea. It was nice to have my "gut" match up with his advice. I feel like this change is going to be SO good and is a true Godsend. He also agreed to take on the girls as their primary.

Thanks to Dr. McP and the pulmonologist pulling many strings, we were able to get Kate's echo cardiogram done today. They basically said they wanted it done to clear her for the procedures. We tried it without any sedation, much to the cardiologist and echo techs uncertainty. Kate was awesome! She was totally still for the whole thing. The only time she wiggled was when she tried to dance to a song on the video she was watching. I did slip her about 10 M&M's, which helped. The cardiologist we saw a few weeks ago, Dr. W, stuck his head in and said he would be watching from his office and would meet with us afterwards. Usually you have to wait several days for the echo to be read, so this was a great surprise. He came in afterwards and explained that things were exactly what he suspected. She has a very small VSD. It was small enough the tech had trouble measuring the shunting (blood moving from the wrong side). He once again stated that this had nothing to do with her pulmonary issues. While I am not sure what the pulmonoligist feels, at least he now has numbers and facts to look at. It will be so nice to have everything on the table for the follow up appointments next week. It always stinks to go in and hear, "Well, let's see what such and such shows." I am sure I will get a copy of the echo report later with measurements and all. Tonight we are praising God for answers and good ones at that!

Both of the girls are still gunky. They have horrible junky coughs. Kate still isn't wheezing though and hasn't ran fever at all. We are praying the anesthesiologist doesn't cancel after hearing her. She started having green drainage today, so after a quick call to the pedi, she's on antibiotics, just to be safe. We should be starting things at 9:30 and it should take between an hour and an hour and a half. We will have to return on Friday to have the pH probe removed, which I'm told is quick. Then we have follow ups for the next few weeks.

Other than that things are alright around here. Leah has been a REAL toot lately. She has no regard to rules and is so unlike herself. Today I found her standing on the tank of the toilet. That was after she opened the door at the hair salon, while I was getting my hair cut, let Kate out, held the door shut and proceeded to scream, "Kate's outside playing", while Kate ran off through the courtyard. Yesterday she was supposed to be playing in the backyard and I found her in the woods at the end of the culdesac. She smirks when she gets caught. I know that she is jealous of the time I'm spending with Kate, despite the fact it is not enjoyable. I know I need to find special time for just us. That being said, we are on zero tolerance with her and she is "bored" because she can't go outside without one of us there. And she has a sore hiney. I hope that this passes soon.

Daddy-O is working like a mad man. I don't know how he keeps the hours he does. He is truly amazing! I went to the dentist this week...with both girls...by myself...for a quick cleaning. The appointment was wedged in the middle of two other appointments the girls had to be at so I brought them along. Two and a half hours later, we left the dentist. Like a two and a half hour dentist appointment isn't bad enough? Try it with two kiddos climbing all over you. If I had known it would be so long, I would have had Daddy-O come and take them to lunch. Needless to say, my teeth were not in very good shape, hence the extended appointment. I had root canals done on my two front teeth a long time ago and apparently one of them is totally damaged from the inside out. Joy! They think there is a chance they can save the tooth (isn't it already dead? Strange), but they aren't 100% sure. It will require oral surgery to fix and the dentist is going to study my x-rays and consult some of her colleagues on what to do. One of my back teeth has a huge chunk missing from me grinding it and that is going to require major work too. I can't wait to see the bill from that! At least I didn't have any cavities, right?

Well, that's about all for now. Here are some specific prayer requests for tomorrow, if you don't mind laying them before the throne!

1. For the procedures to go on as scheduled.
2. For guidance for the doctors.
3. For the things that are giving Kate trouble to be very apparent and lots of answers.
4. For safety.
5. For minimal effect on Kate, emotionally and physically.
6. For Leah's attitude and behavior.
7. For peace for Daddy-O and I.
8. For a clear game plan.

Thanks!

The New Guy and Resting Easy

2010-01-14T14:42:00.007-06:00

I've never been one to keep up with New Year's resolutions, so why start now? So my last post was a total "I'm ticked and gonna vent" post. Sorry! To say that I have been feeling desperate, depressed, overwhelmed, exhausted, etc. lately would be an understatement. In the last week though I have had so much support from family, friends, doctors and my husband. It has made a HUGE difference. I still get frustrated. I still over think. I still worry. But for now, I'm a totally sitting in God's peace. Thanks for all the thoughts and prayers. They are most certainly helping.

I'll back track a little and then jump into the last two days. If you've read my blog before, you know that I've had a lot of trouble getting any clear answers concerning Kate's health. This constant torment of inconsistency is what has just about pushed me to the edge. As wrong as it is, I've often thought that at least the parents of kids with cancer know what they are dealing with and have a plan. Not knowing what is wrong or what to do is horrible for a control freak like me (and yes, I know that is why God is leading me down this path!). I have definitely learned that I am NOT in control, even a little.

A few months ago, I was introduced to a sweet lady at church, named Michelle, whose daughter has a complex medical case. We spent a while chatting about our cases and she highly recommend a pediatrician that really went above and beyond to get to the bottom of their case. She talked to Dr. M and asked him if he would look at Kate's chart and see if we were missing anything. He agreed and suggested he could "use some midnight reading". The week before Christmas, we dropped off a full copy of her record, including my personal notes, lab records and pictures. Sunday at church Michelle and I touched base and when she learned I hadn't heard back from Dr. M, she recommended I schedule an appointment to go in and see him. I called and was able to schedule a conference that would allow for a good amount of time.

Yesterday was Kate's cardiology appointment with Dr. W. To date we had one pediatrician who told us she had a murmur that needed to be checked, one pediatrician who didn't hear anything until I pushed her on it and then diagnosed it as an innocent murmur and a pulmonologist that didn't hear anything. Had it not been for the fact that I am fed up with the guessing game and am grasping at straws, I probably would have dismissed it all. The nurse did an EKG, which Kate sat completely still for. The cardiologist came in and started by explaining that Kate didn't have a serious problem, just by observing her activity and size. He then went through the same old spiel about innocent murmurs, what they were and that there wasn't anything to be done for them. We discussed similarities between his daughter and Kate. He then listened to her and said, "Well, never mind. She has a ventricular septal defect or VSD". He explained the heart and drew a diagram. He explained that Kate has a hole in the septum or wall that divides the left half of the heart from the right half in the lower quadrants. This hole passes oxygenated blood back into the non-oxygenated side. Basically it makes her heart work harder than it should.

Large holes cause more severe symptoms. Typically, before the child is one, the hole will close on its own. Occasionally, they will close by the time the patient is four. The test to measure the hole is an echo cardiogram. In a child Kate's age, he said, this would require general anesthesia. He didn't think it was important to do one now because it was not symptomatic at this time. Her EKG was normal and all of her chest x-rays were clear of swelling (a sign of distress). He said that if it was still audible at age 3 or 4 we could do an echo without sedation and determine what to do then. If the hole was very small, she could just live with it. If it was too large, she would have to have surgery to patch it. In his opinion, from a heart standpoint, the defect did not effect her breathing issues or anemia.

Strangely, I was ecstatic after leaving. I was fully expecting to hear that it was innocent and to scratch it off her list. Even though this was not good news, it was the first appointment I walked out of with a clear diagnosis and a plan. It made sense. There was at least something there. I felt slightly crazy for being excited that my child had a hole in her heart. Maybe I am crazy?!?! I did still question, to myself, whether or not this had an effect on her other issues. How many blood and oxygen problems can one have without them overlapping?

In our church, there are two children, whose mommies I am close to, that have had very similar defects that were corrected with surgery. It is such a blessing to have them to call with my millions of questions. Everyone I talked to was surprised that the doctor did not go ahead an do an echo to get more answers and suggested I push for it. I did call and leave a message for the pulmonologist's nurse. I just informed her that Kate had been diagnosed with this and that I didn't know if it would change what all they wanted to do on the day of the procedures. I didn't hear back. In a simply "unlike me" way, I prayed that God would make it clear today and, get this, didn't worry about it.

Today we went to our conference with Dr.M. We were called back before I finished filling out the paperwork and shortly after, Dr.M came in and introduced himself. He explained that he had emailed me about her chart, but it didn't go through because of a typo. He excused himself for a minute while he printed it out. We spent the next hour and a half discussing EVERYTHING. He was absolutely amazing and a total God send. He covered so many things, was so knowledgeable, so down to earth and so willing to listen to our every concern. He is most definitely a go getter and as he stated many times, "I just like to know what we are looking at". He isn't a fan of unknown's. He is also my new best friend! :) Here is a brief, unorganized breakdown of what he said.

- Regarding the lesion on her arm x-ray - Since the radiologist that read it did not give a diagnosis or a name to the lesion, he was not comfortable leaving it that way. He said that bone marrow issues (ie. cancers) don't always show in routine blood work. However with all of the test she has scheduled, he felt that it was okay to wait until summer to do an MRI of her arm. This issue was one I had laid to rest, but he doesn't want to leave any stone unturned!

- Regarding her immune deficiencies - Her original labs showed deficient. Her second set at the big lab showed low normal. He wants a third set drawn so he can take the average. He doesn't want to guess which set was "right". He also wants to add a few extra tests that he is curious about. It just so happens that he did his residency (I think) with our immunologist and knows her well. This leaves me with no qualms about emailing her with his requests, knowing that there is a mutual respect there. Small world? He even mentioned that she would probably refer to him as an idiot and then do the test. :)

- He feels that she is on a dangerous level of steroids, both during flare ups and her daily meds. Basically he explained that the majority of his asthmatic patients have good asthma control with 1/4 of the daily steroids she is on. Despite being on four times the dose, she has no control. He wanted to switch to a different drug that is not really approved for children, but said I could run it by the pulmonologist, Dr. H, first. He also wants a sweat test done to rule out Cystic Fibrosis (we have this scheduled) because while he doesn't really think she has it, she is acting like a CF patient and he wants to rule it out. He does feel that the heart defect could effect some of her breathing issues. He still thinks she is going to be an allergy/asthma/eczema kid regardless, but feels like it does play at least some role. He actually has a kid that tested negative for CF, but has all of the symptoms of it, so he treats him like he has it and it works. His motto seems to be "treat the patient" regardless of tests and textbooks. However, he is VERY educated and not afraid to use all of the specialists too. He is of the philosophy if the meds aren't working, find one that does, regardless of protocol or negative/positive tests. He has an amazing balance about him. He's just as interested in learning as he is fixing the issue. It's like it's a challenge to him.

- He feels that her low immunity, asthma and heart defect all make it easier for her to get sick and make it harder to get over. It's like she's getting kicked while she's down, constantly.

- He wanted an echo cardiogram done soon. He wasn't sure why they didn't do one yesterday. He said there is a good chance they will still wait if she needs surgery, but he wanted to know what he was dealing with. While listening to her he said it was most definitely a classic VSD. Two doctor's; one diagnosis? Could it be? The only thing he noted different was that in most VSD's the murmur is only heard lower since it is in the lower chambers. He could hear some noise higher than normal too. This made him even more certain that we needed an echo now. Sometimes there can be multiple defects and the sound of one covers up the others. I told him that she would be sedated for the procedures in a few weeks and I wondered if they could do an echo then. He said he would call the Pulmonologist and the GI specialist, which he knew both by first name, and see if it could be arranged. If they couldn't, he would just order it himself for a hospital around here. He said that it might be stepping on toes a little bit, but he didn't mind and really wanted to know. Have I mentioned I like his style? He also said in his experience, the vast majority of VSD's close by the time the patient is one and since Kate is pushing two, he felt more likely then not, it wasn't going to close on it's own.

- He agrees that we need to continue with the plan to do an EGD scope, pH probe, bronchoscope and cilia biopsy on the 28th.

He was so good! He really was so finely balanced. Bold and humble. Pushy, yet a great listener. Book smart and full of common sense. Experienced and edgy. I have never met any doctor like him and think that he will be on this case until she is well or diagnosed (or both!!). Glenn was able to go to the appointment with me and he seems to like him a lot too. He ended the appointment, which I'm positive robbed him of his lunch break, by informing me that he was sending me the email again for my records and so that I would have his email address. I promised not to abuse it and he said, "I'm sure it's obvious, I like to talk. Emails are great for me because I can answer quickly without getting too chatty. Use it anytime!". To top it all off, I learned from Michelle that he is an active Christian. I am SO thankful for friends that listen to God's prompting (Amy, Michelle.....I mean YOU) and for this wonderful doctor, who is going to not only get the ball rolling, but make sure it makes it to the goal. God's hand has been so apparent this week. I just had to unclinch MY fists and reach out for it. It is so amazing and refreshing to see things turn the corner. I have an overwhelming peace and know that the Great Physician has her very thick chart on His desk.

This afternoon I was on the phone with my mom, filling her in on Dr. M, when I received a call on my cell phone from the pulmonologist's office. I answered it and the conversation went like this.

Nurse: "Hi, I got your message and we need the cardiologist to put the results of the echo in the system so that Dr. H can review them."

Me: "Oh, I'm sorry. They didn't do an echo."

Nurse: "WHAT? He diagnosed it and DIDN'T do an echo?"

Me: "Yeah, he explained that he didn't want to put her under general anesthesia for it when he would just watch it anyway. He will probably do it when she is 3 or 4."

....remember, I am the type that WANTS TO KNOW.... My instinct said PUSH FOR IT.. however, I wasn't going to push. God's timing seems to be working better for me.

Nurse: "Wait, 'til she is 3 of 4? Does he realize that she is having all of this trouble?"

Me: "Yeah, I mentioned it, but he didn't think it had anything to do with it"

Nurse: "NOTHING TO DO WITH IT? It has LOTS to do with it. This is why she gets sick so often. This is why she doesn't get over it like she should. Who was this guy? Where did you find him? They don't even have to use general anesthesia to do an echo. They just give her some "happy juice" and she gets sleepy for 45 minutes."

Me: "Well, he is with the same hospital you work with. I don't know"

Nurse: "I used to be a cardiology nurse. This is crazy. I need to go talk to Dr. H. He is definitely going to want an echo done soon. I just don't know what the best way to get one is. I don't want to step on toes."

Me: "Well, we happened to see a new pedi today who also wants it done. He will actually be calling Dr. H today to try to coordinate it for the day of the procedure since she will already be sedated, but has no problem scheduling it aside from that if he needs too. I'm sure he would be okay stepping on toes if you need him to."

Nurse: "I'm going to go talk to Dr. H. I'll call you tomorrow and let you know what we decide."

Crazy huh? This is the same office that blew me off, more or less, at our last visit and didn't think she even had a murmur. Now with three simple letters, "VSD", everyone's attitudes have changed. My quest all along has not been to prove that something was wrong. I, unlike the rest, was certain of that. The question, to me, was what was wrong. I am not certain that this is the answer to everything. I think she has a lot of little things that contribute to the big picture, but it feels SO amazing to have any answers. To have a doctor who is going to search, listen and learn with us is priceless. Thank you all for your prayers. I know that they HAVE been heard. I know that Kate's future rests in the palm of God's hand and I would want it no other way.

New Year's Resolution

2009-12-31T13:35:00.004-06:00

After writing about Kate's history, I was planning to write a post about what exactly is wrong with Kate currently, but something has become painfully obvious today. Apparently she's not the one with issues. It's me. As was pointed out so clearly at a doctor's appointment today, it could be worse. Someone will learn today that their child has cancer. Apparently I have issues, of the emotional/mental sort. As such and the coincidental timing of this "finding", as well as the feeling that people are flat out tired of me, I am making a New Year's resolution.

For 2010 I will:

- Not talk, blog or post to Facebook about Kate's health.

- Not seek advice, referrals, support or opinions regarding Kate's health.

- Not research possibilities with her health.

- Simply answer, "She's great" when asked about Kate. If you catch me answering differently, I owe you a buck.

- Will take Kate to the doctor when she is sick, but will not interject my opinion, feelings or concerns.

- Quit seeking the bigger picture and simply put "band-aids" on Kate's symptoms.

- Give her the medications that which ever doctor we saw last says to and not question what other doctors have said, nor the effect these medicines may have on her.

- Attempt to treat Kate in the manner that a home health nurse would (when she is not feeling well) and not let my Mommy emotions get in the way. This is to include not complaining, over reacting, worrying and all of the other little differences between a mommy and an employee.

- Quit letting these little things get in the way of my relationships, dreams, goals, plans, spiritual life or personal life.

- Attempt to regain my sanity and mental health.

Please feel free to assist me in these goals, as it will take a little while to make them my norm. Wish me luck! Here's to a fabulous 2010!

The Beginning of the End

2009-12-31T09:03:00.000-06:00

At a doctor's appointment on Wednesday, I was reminded that things could always be worse. As true as this is, I still feel like I need to get some things off my chest. Below is an excerpt from a letter I will be sending to the pediatrician. These are my thoughts and feelings today.

"After leaving your office on Wednesday, I felt horrible. I have had a huge guilt trip just from the thought that I could be so inconsiderate of others, while being concerned for Kate. You are exactly right. It could be so much worse. Like you said, it could be cancer. It could be so much worse than cancer. After close to a dozen trips working in medical missions in Honduras, I know this first hand. I have worked alongside doctors as they treated elderly patients, who were seeing a doctor for the first time in their lives while on their death bed. I don’t know why God chose for me and my children to be born in such a blessed and privileged country, but I’m thankful that he did. I know that while Kate and Leah both have had “little issues”, they would have had an entirely different outcome in a third world country. I write this not as an over privileged, closed minded person, but out of sincerity.

Cancer sucks. It is most certainly, a horrible disease. While I personally have not yet had to deal with it, I have watched my uncles, grandparents, childhood friends and even my mother battle with it and in some cases, lose their lives to it. It can have huge effects on the patient, as well as the families surrounding the patient. The patients can wind up on so many medications that you have to wonder which is worse, the disease itself or the side effects. The medications can have long term side effects, some of them not even known. It can affect the patient’s personality and behavior. It sometimes makes children unable to participate in normal childhood activities, like going to preschool, Bible class or the playground. They often spend many days of the week in doctor’s offices, labs or hospitals. They often miss out on birthdays, holidays, celebrations and vacations.

It most certainly affects the other siblings in the household. The constant care of the sick sibling, lack of attention shown to them, constantly being drug to appointments, being made second priority and stressed out parents eventually take their toll on them, too. Sadly, they somehow begin to feel less important.

The effect it has on the parents can be detrimental. There’s the financial stress of what bills to skip this month and what to live without to pay for medical care. There are the sleepless nights and never ending days. There is the constant giving of medications, soothing and comforting the child, scheduling and getting to appointments. Sometimes careers are put on hold so that one parent can stay home and tend to the sick child. One parent may even have to pick up a second job to help offset the expenses. Marriages are put to the test and pushed to the brink. Parents are forced to make decisions they aren’t formally educated to make, based off information from so many different sources, about the well being of their child. It seems at every turn there are skeptics, critics, conflicting advice and doubt. It is enough to make anyone go crazy.

Sure, there are the good days, when everything seems all too normal. You let down your guard and breathe a little easier. You try to soak them all in and feel normal once again. In the back of your mind though, you know you are still on that dreaded rollercoaster. When the bad days come, you put everything on hold. Your priority becomes your child, not your career, your house, your family. You do without so many things like sleep, time for yourself and often, little things like a meal or shower. You eventually lose yourself. You don’t know who you are apart from being your sick child’s home health nurse, chauffeur and advocate. Your life seems to vanish. Despite the fact you know this is a season of life, there are days that you can barely hold your head above the water for that 24 hour period.

You wonder how other people do it. You see people that have it so much worse than you do. You see people that have it so much better. It doesn’t change where you are at though. To you, for now, this IS your life. Sometimes (or maybe for some people) the LITTLE things can be the BIG things. Despite the fact we aren’t dealing with BIG things (cancer), our LITTLE things (asthma) suck too. I am, by no means, trying to say that asthma is as bad as cancer. Looking at the list of effects that LITTLE asthma has had on our lives, I can’t imagine what it would look like for the parent of a cancer patient. I know that if I were to face something bigger, it would put it all in perspective and our little things would probably become obsolete. It still doesn’t change the fact that right now, this is our life."

It makes me sad to close out this chapter in life, but for now it's what I have to do. I can't handle any more negativity in my life. I can't handle being told that "it's not good to give my child these medicines" when she is needing them and then "there's nothing else you can do" when she doesn't. If there is nothing else to be done, then I need someone that will simply warn of the effects once, prescribe the medicines and let the rest be. I don't need the doubt. I don't need the stress. I don't need the worry.

So What IS Wrong, Anyway?

2009-12-22T22:28:00.005-06:00

So I get asked often, "what exactly is wrong with Kate?". I may decide to pull all of this information down at some point. I'm not sure what is too much for a blog. To answer this question, I am posting excerpts from some of the info I've pulled together for all the specialist appointments. My hope is that this gives you a little insight into Kate. My prayer is that someone will read this and will have gone through something similar and will be able to advise us as to what to do next. Far fetched, I know.

1. Kate has had horrible, chronic diaper rash. She has gets a bright red, painful (to the point of vomiting) rash that has blisters at times, swollen areas, and often includes open sores. It is very raw and bleeds a lot. It happens every 2-3 weeks, if not more frequently and lasts anywhere from a day to several weeks. It is usually not associated with any other symptoms (ie. Diarrhea). We do not let her drink juice and have watched closely for foods that might be causing this but there doesn’t seem to be a common denominator. Her bottom can go from being totally clear to horrible burns with just one diaper. We are VERY cautious about changing her immediately after she has defecated. She has always been prone to diaper rashes, but the sores and extent of it have gotten worse the older she gets.
2. Kate had a labial adhesion a couple of times when she was younger. (5 months old)
3. Her umbilical cord had to be burned off because it still hadn’t made progress after 1 month. She also had a reaction to the silver nitrate that caused severe burns around her naval. This may have been caused by a Band-Aid the doctor placed over it to protect her clothing.
4. She was in physical therapy through ECI for being very pigeon-toed, bow legged, standing on the tops of her feet, funny gait, etc. She has outgrown most of this with age and walking, but still has some signs of it.
5. She has had several times where a large lump shows up on the side of her head. The first time it looked like someone had placed a golf ball under her scalp. She is allergic to mosquito bites and the doctor thought that she was just getting bit in very vascular areas, causing severe swelling. It is usually hard as a rock, but doesn’t hurt to push on it, nor does it turn blue like a bump would. It has always gone away within a week. (first time at 13 months old)
6. Her blood counts seem to be odd often. She’s had a LOT of labs drawn and I don’t know if there have been many, if ANY, times they did not show a “virus”.
7. She had a bad “virus” that caused a temperature of 104+ for a weekend. Her labs showed she was neutropenic (ANC 900). When her temp came down, it ran around 97 for a few weeks. It took quite a while for her labs and temp to come back up. (11 months old)
8. She has had goopy eyes and pink eye often. (earliest 3 weeks old)
9. She has had sinus infections (or at least lots of really nasty, green drainage) since before babies are supposed to have sinuses.
10. She has had MANY “viruses” (stomach, respiratory and skin).
11. The doctor was fairly certain she had RSV, although the test never showed positive, despite 3 different test dates. (5 ½ months old)
12. She was a very wheezy, rattle-y baby. Her reflux was not the classic projectile, but rather came out of her nose 90% of the time. She would also choke and hold her breath to the point of turning blue, often. (as early as 2 days old)
13. She has been diagnosed with a heart murmur and we are planning to see a cardiologist for further evaluation. (first noticed 18 months)
14. She has a lesion on her right humerus that has shown in some of her chest x-rays. We had an arm x-ray done to rule out anything bad and it came back showing it was just a spot that grew funny.
15. She had an upper GI when she was 1 month old that showed severe reflux.
16. She’s had many chest x-rays because the doctors constantly think she has pneumonia, but she has yet to be diagnosed as having pneumonia. Every time the x-ray comes back showing something “viral”. I am not sure if she has had a “clear” x-ray to date.
17. Her illnesses do not seem seasonal. She was just as sick in the spring and summer as she is in the fall and winter.
18. Her labs show anemia (RDW-CV always high), but the doctor is just now treating this with iron.
19. Most doctors feel that Kate, “looks way too good to be so sick”.
20. There are many times that Kate sounds horrible and her O2 saturation is in the high 90’s. Other times she does not sound as bad, but will have O2 levels in the low 90’s.
21. Kate's hands have looked like this (see below picture) for the last 3 to 4 weeks. At first we assumed they were dry from the cooler weather and running the heater. Then we thought it might be a reaction to her medicine changes. They look like a one day old baby or a very elderly persons hands. Then skin is very fragile and sensitive. It's almost painful for her when we touch it. I was able to take this picture to the pediatrician yesterday and she diagnosed her as having eczema. So now she is on a steroid cream.

Here's a little history on Kate.

1. Kate was born via c-section at 38 weeks and had no complications before birth.
2. She had no problems at birth and was 6 pounds, 15 ounces and 20 inches long.
3. Kate was breastfed only until she was 15 months old.
4. She started table food by the time she was 6 months old.
5. She has been “ahead of the curve” on all of her milestones. At 18 months she can jump, hop across the room, hold a pencil correctly and uses silverware properly. She has always had amazing fine motor skills.
6. At 18 months, she speaks in sentences often and asks many questions (where’s my…, what are you doing, why, who is that, etc.).
7. Kate does not attend any type of childcare. She has always stayed home. She does not even go to Bible class or the nursery during activities. She has one sister, who until September did not attend childcare or school either. Her father and I both work from home. She has never played on a public playground, other than a handful of outdoor parks. She has had very minimal germ exposure and has what would appear to be very minimal germs carried into the household.

So who really knows what IS wrong with her.

I LOVE Roller Coasters....

2009-12-21T23:02:00.002-06:00

...just not the emotional ones.

Today my Mom and I took Kate to the pulmonology clinic at the med center. We got called back and were in a room within 10 minutes of arriving. That place simply amazes me. They are most certainly a well-oiled machine. The nurse came in and took a brief history and within minutes the doctor was in. All in all, he spent about an hour with us. Here are the main points we gathered from the appointment.

1. Reflux may or may not play a role in her asthma. There is no test to see if she aspirating on stomach acid, food, etc. or if it is causing her lung issues. According to him, there is not a huge chance she is. This is very different from what every other doctor has said. Most have blamed her "suspected" reflux as the culprit for a lot of things. We aren't even sure she really has reflux at this point.

2. She IS on oral steroids far too often and we need to fix this. The best way to do this is through daily control medicines. She is on two currently and we are waiting to see if we need to go up on the dosing. She caught a upper respiratory bug last night, so this will be the first big test for her current doses. Usually within 24 hours of a snotty nose showing up, she is full out retracting, on breathing treatments every 3 hours around the clock for a week + and oral steroids. If she does wind up on oral steroids from this virus, we will be increasing her daily steroid.

3. She looks too good to be too sick. We get this SO often and while it is true, I feel like sometimes we get pushed off because of it. She is gaining weight fairly well and has not had any hospitalizations yet, so they consider her healthy.

4. The most likely "diagnosis" is that she falls into a class of kids who "wheeze with viruses". They wheeze every time they get a virus. Viruses get less frequent and less severe and usually fade away by the time they are 5. The viruses are fewer in the spring and summer and worse in the fall and winter. This is not true for Kate. She was JUST as sick ALL spring and summer, if not worse, than she has been for the fall and winter seasons. The only thing to do for this is control what you can, treat symptoms and wait for them to out grow it.

5. There is a slim chance that she could have Cystic Fibrosis or a problem with the cilia in her lungs and throat. Cilia are the hair like structures that move rhythmically to remove germs. The only way to test for that is to put her under and take a biopsy from her throat. I don't think we will do this yet, as he didn't say this would be possible to do while she is under for the other procedures. I also am not interested in doing too much to her just because she is sedated. The test for CF is a simple sweat test where they measure salts in her sweat. We will be scheduling that in the next month or so since it is simple and will be very simple to rule out CF.

6. According to him, her immunology isn't playing any role in this. I find that very hard to believe, but I am no doctor. He felt that since the immunologist didn't want to see us back for a year, she doesn't have immune issues. Also, her chest x-rays didn't show any "big bad pneumonia" which would be there if she "really" had immune problems.

7. There is a good chance that she will have allergies (I have HORRIBLE ones) and that will probably start showing up by the time she is 4 or 5. That is also about the time she should be outgrowing the "virus" issues. If this does become a problem, there is a good chance she will have continued issues with asthma from the allergies.

All in all it was a frustrating appointment. The doctor was very nice and was kind and compassionate, but I very much so left with the feeling of "and you came down here why". He made the comment that we were "making the rounds with the specialists" and while I KNOW it is just my insecurities, it hit me wrong. I think he meant it in the sense that we have a whole lot of appointment lined up. Believe me, I know. I am not scheduling appointments with specialist every single week because I'm bored. Our pediatrician is scheduling them as a result of her findings. What should I do? Not go? Write it off? "Ma'am your daughter has a heart murmur that I think should be checked out"... "Nah, we're good, but thanks". Believe me, if I had one week without an appointment, it would be heavenly. I promise, I DO have more of a life than that. If not, I promise I would take up knitting or basket weaving or sleeping!

Like I said earlier, he was not just rude and cold, he did try to be kind and caring. He said several times that he realized I was hoping for an answer and unfortunately, he just didn't have one. He commented on how well she sounded today (kind of like taking your car to the mechanic?). He didn't deny anything I was saying. It wasn't that he thought she was a perfect, normal kid. He said he totally gets what we are dealing with. There just isn't a big "key" answer. He looked over the list of issues we've had with Kate over the last 19 months and said that he didn't feel that any of them had a link to any other one. Things like the diaper rash her was quick to say that kids have sensitive hineys. Her constant viruses might be a little high for a child that isn't in daycare, in his opinion, but still nothing big. Most of the other things were unimportant or isolated and he didn't hear a murmur in her heart (although I heard it even tonight).

The action plan at this point is that he is going to do a bronchial scope in mid-January while she is under general anesthesia for the EGD scope and pH probe that GI will be doing. This will just check for damage or abnormalities. If the EGD scope and pH probe show that her reflux is out of control, we will treat it and hope that the asthma settles down. Otherwise I guess we keep working on getting her asthma controlled with daily medicines.

I hate that she is on so many medicines. I HATE that she is on such high doses of such strong medicines. I hate that she is on so many strong doses of medicines and is still not getting relief. Appointments like today tempt me to take her off all her medicines and treat her like a "normal" child. You know, let her play on public playgrounds (which she has NEVER done), let her go to Bible class, or heaven forbid, the church nursery. I mean, if she doesn't have "any" of these problems, why treat her for them? The medicines can't be good for her long term and they sure aren't cheap. Part of me feels like we might be over medicating and covering up for how bad she might really be "drug free". Maybe that is making her harder to diagnosis. I don't know.

Leah, Kate and I all are sick. We all have upper respiratory bugs. We all feel lousy. Leah has had it for over a week, so I took her in to Dr. F tonight. She has been sick around 10 days and it just isn't quite clearing up. Dr. F felt she was on the upswing, but wrote for an antibiotic since it is Christmas week and said not to hesitate if we needed it. The appointment wound up being a good time to touch base with her too. I waited until she asked about Kate and let her know what the pulmonologist had said. At first she was a little frustrated he wasn't doing testing or anything. She then refocused for a minute and came back with some great answers. She said, "You know the reason I wanted her seen, which is the same reason you were concerned, is that she is on oral steroids SO often. He agreed with that. He is wanting to get her daily medicines straight to try and make that happen. That was our goal". Very true!

When I told her my frustrations with the all the medicines with no change in results and confessed the fact that I was tempted to pull her off all of them she had this to say. "Whether he said it or not, saying that she looks so well should be a compliment. With all that she is dealing with she should have been hospitalized and she should look worse. You have done an amazing job keeping her healthy and for that you should be proud. Let's not see how bad she "could" be". I do not add that to toot my own horn, but I know there will be many days in the future that I will need to read that again. It is SO hard to know if you are doing the right thing. I think her point hit home. How much worse could it be?

I don't mean to sound negative today, despite being tired and sick.... and sick and tired. Every single specialist appointment ends with one of two results. #1 - "Go see _________ (another specialist) and let me know what they say" or #2 - "I don't really see anything. She'll out grow it when she's 5". She is my last baby and I really don't want her to grow up quickly, but if 5 is really magical then bring it on! Every time I leave an appointment, I praise God that we didn't hear the dreaded words, "Your daughter has __________". Unfortunately I often feel that if we had a diagnosis to work with, it would make my life so much easier. At least we would know. We wouldn't worry. We wouldn't search high and low.

I know that there is a really good chance that there isn't a simple answer or an answer at all. I know that God has a lesson on the other side of this for me. But for now, it is simply hell. It is seriously emotional, physical, spiritual torture for me. I'm too type A. Too controlling. I can deal with facts. ANY facts. Just give me facts. The what if's, worries, endless prayers, sleepless nights, guilt, stress, should I"s, why didn't we's.... they just don't end. It is ALL consuming. It has become my life. I keep saying that I'm done with all the doctors, tests, procedures and such. I make a strict plan to ONLY take her to the pediatrician and ONLY under this criteria. But then she gets sick or gets a new symptom. Could this be the missing piece? I take her in and they "find" something new and usually unrelated and I can't ignore it. I obsess. I research. I worry. I stress. Then the appointment rolls around and I get brushed off. Only to hop back in the line for another ride on the roller coaster.

Heart of Gold

2009-12-17T23:54:00.003-06:00

The last few Sundays our preacher has been using material from the Advent Conspiracy. It is a fabulous program to get our mind and morals back to the true reason for the season. The first week we were asked to go without sodas and coffee for a week and instead use the money we would normally spend on those items to give people the gift of clean water.

This past week we were all given bags of rice and were asked to eat just rice for three meals and give the money we would have spent on those meals to give food to someone who was starving. We decided we would go ahead and try to include the girls in this.

Leah has gotten to the point of complaining ALL of the time. Her shirt itches. Her shoes hurt. She doesn't like this. She wants that. Several weeks ago, I had heard all that I could handle. I explained to her how fortunate and blessed we were. We talked about the numbers of people who did without. I put a new rule into effect immediately. If you argue or complain, it is gone. No if, ands or buts. Your shirt itches, it goes to a needy child who would be thrilled to own a single shirt. This isn't what you wanted for dinner, go to bed hungry. It may sound harsh, but it had gotten way out of control and I cannot handle the griping, knowing how blessed we are. If we complain, in my opinion, we don't deserve it.

The "rice challenge" fell right in line with this lesson we were teaching. I explained to Leah what we would be doing. I took her into the office and we looked at pictures of starving children, who spent their days in an endless line, hoping to get a small scoop of rice. We talked about the fact that many of them waited all day long only to be sent home empty handed because of shortage. We talked about how these kids had never tasted Mc Donalds, fruit, vegetables, meat, milk, chocolate or anything other than rice. We looked at pictures of houses in Honduras. We looked at pictures of the houses my dad has built at an orphanage there and how lucky those kids were to have a house and food now. I was a little afraid that I had gone to far for my fragile 5 year old. When you google "starvation" or "poverty" there are some pretty graphic images. Despite not clicking on the thumbnails, she noticed all of them.

We sat down to eat our rice. I watched my extremely picky, spoiled daughter take several bites of her very bland rice. As she ate, you could tell she was struggling to swallow, but didn't fuss about it at all. Several bites in she asked if she could have some soy sauce. I gave in, since she was really trying her hardest. Kate, on the other hand, was happy as could be. She loves rice.

We went to bed that night and I was a little worried she would be up during the night with bad dreams. I'd imagine that some of the images of reality she saw are etched in her brain. I hope that they are and that they stay there permanently. It is so difficult to teach compassion. Much to my surprise, I didn't get woken up until she came in around 7:30 the next morning. She had an envelope that had some money that her Pops had given her in her hand. She climbed up on my bed and said, "Mommy, I think I want to take part of my money and give it to a little girl in Honduras who doesn't have any rice, but I also want to keep some for my piggy bank. Is that okay?". I assured her that it would be okay.

I explained to her that the dollar bill in her hand wouldn't buy her more than a candy bar here in the US. "In Honduras, that will buy a little girl and maybe her whole family, food for a whole month", I explained. Her eyes lit up. She asked about the time she took all of her money from her piggy bank to buy a bike and wanted to know how much money that had been. When I informed her that it was $80.oo and that it would feed an entire town for a month, she was beside herself. When we picked up the neighbor for morning carpool, she couldn't wait to tell her all about it. I am not sure she breathed once in the 15 minute commute.

She told Ava all about kids that don't have food or homes, about how much rice a dollar can buy and about how she is going to Honduras to build houses with her G-Daddy when she turns 15. I informed her that a friend of ours from church is going to Honduras next week and she could send her money with him. She has carried that money around all week and is very excited to see who is blessed by it.

Dear God,

Please help me raise compassionate, giving children. In an ever growing selfish world, I know that this is no easy task. Please help me lead by example. Thank you for this opportunity to touch deep inside her heart. Help me take advantage of every situation I come across that will help instill this in them.

Amen

This experience was one of my favorite, most special memories with this sweet girl. I pray there are many more to come and that I can be there when she builds her first Honduran home.

Praise GOD From Whom OUR Blessings Flow...

2009-12-17T00:00:00.004-06:00

The past few weeks I have been a little down. Almost depressed. I think after blogging and giving everyone who asks "updates", I began to feel like this has become my life. All I do is schedule appointments, go to appointments, do research, deal with insurance, call in prescription refills, pick them up, get tests done, pay bills, give meds. Then I rinse and repeat. The thought of this, mixed with physical exhaustion just caught up with me. Last week I had a little "pick yourself up by your bootstraps" talk with myself and realized many things.

1. I am SO are blessed!

2. It could be SO much worse.

3. Thank God we are in a position that I'm able to stay home to care for Kate.

4. To everything there is a season.

5. What more precious honor than to be able to be Kate's advocate, nurse, comforter and mother.

Unfortunately, several of the reminders were part of the reason I've been depressed. I feel guilty being upset. I feel guilty complaining and griping when SO many people are in MUCH worse situations than us.

I was reminded through a Bible study I'm doing that all I needed to do was to bind myself to God. He would walk before me and with me. I decided I would try my hardest (which it takes) to stop worrying. Second guessing. Doubting. But rather hold on to Him and trust. Immediately my outlook improved. Being able to get some answers at the doctor's last week certainly helped too.

This week has been absolutely amazing. Both girls are fighting head colds and the sleep has been little, but it has been a true mountain top experience. Without getting into too many details, the insurance plan that Kate is on, required us to reapply after 6 months. There are payment tiers based off of income. If you will recall back in June, Daddy-O took a pay cut to get the girls on the insurance because there wasn't any other choice. He then started working a second job just to get benefits.

Fast forward to this week. I hadn't given much thought to the fact that it had been almost six months since we applied. On Tuesday, I received a letter from the insurance company and opened it knowing it would be asking us to reapply. I knew there would be no way we would be accepted since the second job would put us over. I thought about the number of appointments, procedures and tests we have coming up, thought about the deductible we would owe up front with the new insurance, not to mention the way higher copays and 20% of every single lab, test, hospital bill and I panicked for a minute. Instead, the letter was sent to inform me that they had already reviewed our case. Not only did we qualify for another six months, but...But...BUT... since we had SO many bills during the last six months, our copays were being lowered (see: less than half) AND we would be meeting our out-of-pocket maximum before the end of January, leaving the other five months covered at 100%. What in the.... How in the.... Hmmm, only one way to explain that. Praise God!

Later that night, I got a call from Kate's GI doctor. We chatted for a few minutes and he informed me that we should probably go ahead and move Kate's EGD scope and pH probe date up. Her extremely high dose of Prevacid doesn't seem to be making much difference. It will give us a good chance to see exactly where she is at. They will basically put her under general anesthesia and use a scope to check the top half of her GI tract. Once that is finished, they will place a small tube with a probe on the end in her esophagus. This will come out her nose, be taped to her face and looped around her ear for a full 24 hours. It is connected to a monitor that she will wear at all times. We will have to keep a journal, as well as push buttons on the monitor, every time she eats, sleeps, burps, has a reflux episode, coughs, etc. Should be challenging. We will go back the next day to have it removed. The doctor did mention that it would be important to have a cardiologist check her before the anesthesia.

Last week when I called to get an appointment with cardiology, I was informed that you can't just call and schedule an appointment. Our pediatrician had to fax in a triage report so that they could prioritize appointments. It would take 4 to 5 days, once they received it, before someone would call to schedule the appointment. Yesterday, I had the thought that I should call and check up on it. Before I got a chance to, the cardiologist's office called. The soonest we could get in was February, which was better than I expected. I inquired about a wait or cancellation list and was told I needed to call the location we would be seen at. It is a satellite office, for the major medical center, that is about 15 minutes from our house. Almost all of Kate's specialists rotate through there which is so convenient. When I called the receptionist said they could move her appointment up to the 13th of January. I accepted it and hung up.

I had no sooner put the phone down when it rang again. This time it was the GI nurse calling with a date for Kate's procedure. Any guesses? January 14th. As in LESS than 24 hours before her procedure. God's timing? I think so!

On Monday we finally will see pulmonology, Lord willing. Then we have the January appointments and procedure. We still have one more separate specialist to see (who is not even taking new patients for now) and then hopefully we will be done. At least, I pray, we will have a better picture of what's going on.

On another positive note, Leah has been sick with a head cold all week that she picked up from her cousin who was here last week. Kate has had quite a bit of exposure to it and has yet to get it as bad as the other two have. I keep "holding my breath", but so far, so good. Maybe her respiratory drugs are going to do their job now. I just hate that she is so little and on such high doses already.

I know that so many of you have been praying for our family and specifically for Kate. I cannot thank you enough for that. God is most certainly listening.

God is good ALL of the time!!!

Has Anyone Seen My Map?

2009-12-09T15:20:00.003-06:00

Today I took Kate back in to the doctor. You're surprised, I know. After my visit with our pediatrician, Dr. H, at Kate's well check, I knew I wanted to have the other doctor, Dr. F, who heard the heart murmur initially, listen to it again. Kate has had a rash and red, rosy cheeks all week and while I knew it was Fifth's Disease and that there was nothing they would do for it, it presented a bit of a cover to get back in with the afternoon pediatrician. I didn't want to go in for a "murmur recheck" and upset our other doctor. Along with the rash, Fifth's has brought a bit of congestion and Kate's chest was starting to sound a bit tight again. I pulled out my stethoscope to make sure she wasn't wheezing. Although I am by no means a doctor, I could clearly hear what sounded like a murmur. Since our pulmonology appointment was rescheduled for 3 weeks out, I decided I would go ahead and tackle my list of questions with Dr. F. It was good to get a "map" in place of where to go next.

- The lesion on her arm: She reviewed all the history with this thoroughly. Apparently in the original chest x-ray they found a spot in her upper arm that looked like it could have been bad. They rechecked it with an arm x-ray and there is a small abnormality there. According to the radiologist's reports it appears that there is no higher likelihood that this will progress into something more than it is, more than any other spot in her body. It was just a coincidental finding. Dr. F felt that there was no reason to check it again. Case closed.

- The diaper rash: Since this has been an ongoing problem and one that can be tricky to time with her visits, I took pictures of her last flare up. I will by no means be posting them, as my husband was totally freaked out to even have them on a computer. This did allow the doctor to get a better look at it in stages. She wasn't really sure what to think, but agreed that it is not yeast nor normal. It is definitely some sort of burn, like an acid burn. She wants us to follow up with GI about it. She said there was a good chance we would need to see a dermatologist. Since they are very difficult to get appointments with, we will go ahead and book one now and if GI can resolve it first, we can just cancel.

-Her blood counts and x-rays: She is not really sure why her labs are always out of whack. They did draw again today and they were still out of whack. She also appears to be anemic so we are starting her on iron and will recheck that in a few weeks. She is also unsure why every single one of Kate's chest x-rays shows "viral" stuff. She is wanting to leave that to pulmonology.

- The heart murmur: She was quick to tell all about murmurs, how most children have one at some point and that the percentage of innocent murmurs is very high. She explained that fever, medicine, etc. can cause faster heart rate, causing a more pronounced murmur. She then took a thorough listen and said she wants us to see a cardiologist. She said it was still there, despite being medicine and fever free, and that it was pretty loud. She reassured that there is still a very high chance that it is innocent, but she felt it was significant enough to be checked.

So basically we will go to pulmonology, then GI, then dermatology, if needed, with a stop at the cardiologist along the way somewhere. I totally trust the specialist to deal with their specialty, but until today, felt like no one was taking a look at all of the little pieces. Once we get through all the specialists, we will go back in to Dr.F and try to put it all together. I do feel that she listened to me and my concerns and was very supportive. She strongly encouraged me to be Kate's advocate and to stand up when I need to.

Making the Cut

2009-12-05T00:21:00.004-06:00

Kate's health hasn't changed much. She's on steroids and breathing treatments at least once a month. She still has diaper rash to the point of bleeding every couple of weeks. She hasn't had an ear infection since her surgery and that is exciting. Since then we've had more of the same.

A few weeks ago, she started with a clear runny nose, like always. I called to get an appointment for the next day, knowing that she would be bad off by then. Our pediatrician went part time last year and only works mornings. We've seen the pediatrician that tag teams with her, working only afternoons, several times. This particular day, the only doctor with availability was the new doctor. I figured it wouldn't hurt to get a new opinion and I would certainly be meeting him at some point, so why not now. We went in and he spent a few minutes examining her and diagnosed it as allergies.

If you haven't read my previous post entitled "FRUSTRATED" please go read it before you continue. I don't want any "you're an idiot comments".

He recommended that we put her on Claritin. Seeing how we have tried just about everything under the sun, I decided that it couldn't hurt to try. Maybe it could be something simple this time. Knowing Kate's history, I pulled the "this ain't my first rodeo" approach and asked that he at least write for an antibiotic, as her file, that's as thick as a phone book, shows she goes south quickly. I agreed to try the Claritin and only use the antibiotic if she got worse. By that evening she was running fever and wheezing. Should have gone with the mommy gut, but it couldn't hurt to try. Needless to say, I don't think the new doc even peeked at her chart and I'm not too impressed.

We started breathing treatments and by bedtime the second night, she sounded really rough. I gave her a dose of steroids (the doctor always writes for more than we will need so that we will always have some on hand) and a double treatment. She was really retracting and kept laying down. Usually she is pretty hyped up and active, even while retracting and having trouble. After a phone call to the on-call nurse, it was off to the ER. When we got there it was packed. This particular ER has a pediatric ER doctor so you don't have to wait to get through everyone, just the kids. We checked in and sat by the main door, away from the rest of the waiting room. People were sick everywhere. This was in the middle of the swine flu stuff and it really made me anxious just being there. I HATE emergency rooms.

We finally got called to triage and she had a slight fever, but her pulse ox read 100%. This is one of the things that scares me so much about Kate. Often she sounds horrible but is sat'ing fine. Other times she will seem perfectly fine and be sat'ing in the low 90's. It is scary not to know. It is so hard to not worry when they sound bad. Especially when it is bed time. I never feel comfortable putting her to bed when she is wheezing. When I saw the 100%, I almost asked if we could just go on home, but didn't want to feel like an idiot if she had more trouble that night. We waited close to 2 hours to get in a room (around 12:30) and by this time there was no doubt that we hadn't waited long enough for the meds to kick in at home. When the nurse came in the room, Kate was literally jumping on the bed. I got the typical, "She doesn't look sick to me" response from the nurse.

He left and we sat and waited. And waited and sat. Finally at about 2:00 I poked my head out and asked if it was going to be much longer and if I needed to go ahead and give her a breathing treatment since she was past due for one and it was obvious we were going to be a while. The nurse made some comment about the doctor forgetting us and the doctor sitting across from him got up and came in. I was worried at this point because Daddy-O had to be at work at 4 am and I didn't know what he would do with Leah.

The doctor came in and said she was wheezing and gave her a dose of steroid. He called a respiratory therapist who came and watched me give her a treatment while she talked about her belly button piercing and tattoos. The doctor then came back in and said to keep doing what we were. No chest x-ray. Nothing. I seriously will not be going back to the ER unless my child is blue. I do need to find out if we can go in and have her pulse ox checked at triage without having to stay unless it is dangerously low. Or maybe if I took her to the fire station, the paramedics could check it? Just a thought.

The next afternoon I took her in to see the afternoon pediatrician. This doctor has seen Kate enough times to know her style. She heard a lot of crackling in her lungs and wanted an x-ray done to check for pneumonia. She switched her antibiotic and gave us more steroids. This doctor is extremely thorough with her exams. While listening to Kate, she noticed a heart murmur. She explained that it was highly likely that it was because of the steroids and breathing treatments and to have it rechecked again when she was off of them.

Five days later, Kate was still wheezing and retracting, despite steroids, antibiotics and breathing treatments every three hours, even during the night. I took her back in, since we had finished the steroids and I was pretty sure she would need more. At this point the doctor informed me that you can't take this steroid more than 7 days in a row NOR more than once every 6 weeks without having to be weened off of it with a tapered dose. I had never heard that before and Kate rarely makes it a whole 6 weeks between courses. I asked her if she felt that Kate's asthma was controlled enough and she sure didn't seem to think so. She recommended that we see a pulmonologist, something that I've asked her primary doctor about numerous times. She increased her daily steroid to 6 puffs a day, and added a new drug, Singulair, on top of it. She also still heard the murmur, describing it as being in a really isolated spot. She said if she moved just slightly in any direction, she couldn't hear it. She felt like there was a good chance it was still the breathing treatments, but still wanted it to be checked again especially since it was in such an exact spot and could have been missed easily.

Fast forward. Kate has actually been pretty good the last two weeks. She's had her horrible diaper rash, worse than I've seen it (bleeding badly, totally raw, sores, blisters), but otherwise she's been good. I took her in for her 18 month well check this past week and saw her primary pediatrician. She did her exam. When I mentioned that we had an appointment with the Pulmonology and GI specialists (that I have asked about getting appointments with before), she said, "Yeah, that's a good idea". Why wasn't it a few weeks ago? Then I mentioned the heart murmur. She responded rather quickly that she hadn't heard it and listened to it again, briefly (like seconds) She then said that she had heard it, but it was nothing to worry about. She wrote down a name and said I could look it up. I asked her to see if she could find where the other doctor documented it, in case she wrote specifically where she heard it and she said that it was so minor, the other doctor hadn't even put it in her chart. When I argued that she had said she was going to and I was pretty sure she had, she finally found it, but still shrugged it off.

I then asked for some clarification on the lesion on her arm. Months ago when she had a chest x-ray, the radiologist noted that there was a lesion on her arm. After an x-ray of her arm, they said there was a spot there, but it was fine. The last chest x-ray she had, he noted it wasn't there (just because I was expecting it this time) despite being there for several before. I asked exactly what it was and she described it as a cyst, a pocket of water or air in her bone. When I commented that it was gone now, she said it would most likely go away, but not for a few years, they just didn't see it this time. When I asked, "So it shouldn't grow or change or anything other than shrink" she answered, "Right. If it were cancer or something it would grow or have rings or starburst patterns" and shrugged it off. I felt dumb for asking, but never know whether this is something I need to mention to other doctors or not. To me it seems that since there is something there and she's got so many other issues, maybe it would be a good idea to check it again in 6 months or something, to make sure it's not changing any. Just a thought.

With the heart murmur, I KNOW that MANY people live with heart murmurs. I know that they don't cause any problems with most people. I am sure the lesion on her arm is the same way. However, when you have a kid that is sick, you don't want to have to wonder. It's not like I go out looking for this stuff. If it is so unimportant, I wish they wouldn't mention it. Now I don't know what to do. Do I go back to the afternoon doctor and see what she thinks? Do I go to a totally new office and have them check it all out? And if I do am, I going to get a whole different opinion to try and sort out? I could really use a "you're on the right track" or a "how'd you miss this" right about now.

The next morning we had our appointment with the GI specialist. He was extremely nice and informative. We saw him a few times when Leah was a baby and I really like him. He spent about 30 minutes going over her history, including lab work, x-rays, etc. and then asked, "what can I do for you today?". We talked about the relationship between the reflux and asthma. He dropped her Reglan and doubled her Prevacid. He said she most certainly has severe reflux and I could sense he was wondering why we didn't come in when she was having blue spells as a baby. He explained that controlling her reflux wouldn't cure her asthma, but should definitely help with the frequency and severity of it. He suspects Kate is having more issues with it than we are aware of. She will still hand us a piece of food after she burps occasionally and even spits up out of her nose some too.

His plan is to try to wait until the spring, giving her every chance to grow out of it (most do by age 1) and then do a scope to rule out inflammation in her GI tract that can cause reflux like symptoms. While she's sedated, the will also place a probe in her esophagus that will record how often and how much acid reaches it. That will stay in for 24 hours. Then based off the results, they will most likely do surgery. The surgery is a fundoplication, which is basically wrapping the top of the stomach around the base of the esophagus to add support and tighten the valve. It's a laparoscopic surgery, but sounds like it's pretty intense. I think there is a minimum 3 day hospital stay involved with it. However, the success rate is very high. The doctor said it it the most effective treatment for asthma/reflux patients. He was sure to let me know that if at any point we wanted to go ahead and do the probe OR if pulmonology wanted it moved up OR if she got any worse or didn't improve on the new medicine dose, he would do it sooner. He is pretty sure she is out of the window for growing out of it, but "felt she was too cute to operate on unless he just had to".

After leaving there, I was impressed. The appointment went so well. I felt like he listened, wasn't being drastic, was giving her body the benefit of the doubt, was kind to her and respectful to me. However, I was a mess the rest of the day. Partly because I dread the thought of another surgery. I also dread having something looming in the future like that. Sometimes it's easier to just have things happen in a hurry and not have to dwell on it. The other part of my funk was because I started second guessing so much.

Why didn't my doctor refer us to GI sooner? As a baby, Kate would literally turn blue from choking while nursing. She wasn't even a month old when she had an upper GI that showed severe reflux. Why didn't I push to get into a specialist? I can't help but wonder if that is where some of her asthma issues stem from and if we couldn't have prevented some of this. It seems like I have to push or go do things on my own and they keep coming up that there is something. It took a lot of convincing to get the lab work for her immune system and then, low and behold, it showed something.

I'm not saying that she is a bad doctor. She is one of the nicest, most down to earth, caring doctors I know. I just don't feel like she's as eager to search as what I need right now. No one is perfect. I realize that she only sees her part of the time and doesn't realize how often we are in there. Right now, I need someone who can stay up to speed on it all and look for the seemingly unimportant clues. I am not wanting to go out and search every inch of Kate for clues, but when things jump out it seems like they would be worth eliminating.

I know that I know NOTHING about hearts, or bone lesions, but as the mother of a chronically sick baby, I can't quit wondering. It may very well be that there is plenty enough evidence that it is nothing already there. I think I just need to hear someone else say it though.

We were supposed to see pulmonology on Monday, but the appointment was moved. I think we will probably go back to see the afternoon doctor and explain the issue to her and see what she thinks. I'm also trying to get another pedi to look over her file and see if we are "barking up the right tree" or not. I figure at this point it can't hurt to have a fresh set of eyes.

FRUSTRATION

2009-12-04T22:45:00.004-06:00

Yes, I am back. And not better than ever, unfortunately. In fact, after this, many may wish that I just hadn't come back! I still haven't updated my blog with cute pictures or funny stories. No month updates or a week in the life of's. Half of the time, I don't want to blog. I don't want to write about all the junk going on right now or don't want to take the time. The other half of the time, I decided to try and catch up, but am unable to log in. Or update. Or post pictures. So I just get frustrated and give up. Sometimes I feel like either Satan or God doesn't want me to keep this blog going. I have seriously run into that many obstacles trying to keep it up. If only I knew who it was trying to make me quit.

My life is frustrating right now. There is no other way to say it. It may not be justified. It may not be to anyone else who looks at it from the outside. I may just be a big wimp. But the truth is, it is. It is to me. I am drained. Physically. Emotionally. Financially. Spiritually. DRAINED. I am surviving. I am blessed. I feel EXTREMELY guilty complaining. I am frustrated. I don't know what to do. I don't know what not to do. I make decisions. I avoid decisions. I study. I second guess. I try to be educated. I pray. I doubt. I am frustrated.

Part of my frustration is with the normal things in life. Leah is emotional. Cranky. Pushing buttons. Kate is asserting her desire to be a two year old. Laundry always needs to be done. The house needs to be cleaned. I want to blog and make the girls memory books. I need to get Christmas shopping done. I need to get the kids pictures made. I need to cook more and eat out less. I need to lose weight and exercise. I need to see the doctor and dentist. I need to spend more time with Daddy-O. I need to spend more time with Leah. I need to spend more time with friends and family. I need to spend more time alone. I need to spend more time with GOD.

Then there is this whole other universe of frustration that consumes my life. This universe is spinning so fast and feels like it is so out of control. I'm a stranger here. A foreigner. I feel like I don't speak it's language or know it's ways. I feel like I don't belong, but yet am being called to lead it.

I am constantly baffled by how frustrating life with Kate can be. I feel like so much of it is cyclical; her health, my emotions. I am constantly bouncing back and forth.
- "She's not going to be around anyone" <-----> "Who cares who she's around, she'll get sick anyway"
-"We have to figure out this, that and the other"<----->"You couldn't pay me to go near a medical facility"
-"This is what it is"<----->"They've got to be missing something"

I could go on and on, but I'm sure you get the drift. I go to this doctor and find out this. I go to that doctor and find out that. Every time we go in for something, they find something different and seemingly unrelated. I am so frustrated.

We spend hundreds of dollars a month on doctor's visits, hospital bills and medicines, just to overdraft the account the next month on the exact same things. Every month I think this month, this is going to be the month that's different, then boom. I think this time, this is going to be the medicine combination that works, then boom. I think this doctor, this doctor is going to have THE answers, then boom. It's like Groundhog Day and it's frustrating.

Kate goes everywhere with us. We don't take her to nursery or Bible class. She doesn't go to child care or MDO. She is stuck to my hip. Every time we "try" we get to pay the consequences. There is no break from it. If she's well, I'm afraid to do anything with her out of fear that she will get sick. If she sick, we don't get to do anything anyway. I am constantly watching. Scouting to see if there is anyone coughing or sick around her. Watching to make sure she doesn't touch too much. Watching that she doesn't put her hands in her mouth. There is no down time. No break. I am always on guard. I feel like we can't schedule anything in advance. What if she gets sick that week. What if we need to get to the doctor. What if. It's frustrating.

I get advice from everybody I know. Most of it very good advice. I'm told, "Don't worry", "Trust the doctors", "She need this or that", "You need to see Dr. X, Y and Z", "I would this", "I wouldn't that" "They should this" or "They shouldn't that". I don't know what she needs. I don't know what to do. I want advice. But nobody knows what it's like. It's always different. I believe God speaks to us through others at times. I also believe Satan can use others to bring us down. How do I know which is which. I am frustrated.

I take her to the doctors and can't get them to listen to me. I can't always get in to see the same doctor. They all suggest different things. Some shrug off things. Some plan for drastic things. I either get the "This isn't relevant" look or the "why haven't you gotten this checked earlier" attitude when I ask questions. How am I supposed to know who to agree with. When do I push for more. When do I pull back the reigns. I am frustrated.

I use my gut. I use my education. I try my best to educate myself when I lack. I pray. I feel like I'm not praying "right" because sometimes I pray for answers instead of cures. I worry. I stress. I snap at my kids. At my husband. At my friends and family. At strangers. I try my hardest to let it go. I lay at the base of the cross. And then I pick it up again. And then I put it back down. I bet HE is frustrated!

I feel like I need to have more faith. Let God handle it. But what does that look like. I have personally known people who have taken this approach far enough that they lost a child to cancer, refusing treatment. I don't want to be that ignorant. Then I look at my grandmother who visited every doctor she could until she found one that "agreed" with her that she needed to be on oxygen. She has spent everyday of her life on oxygen since. I don't want to be like that. Finding balance is frustrating. Do I take her in when she's sick? They do the same things every single time. Do I take her in when she's healthy? Then she'll inevitably pick something up while we are there.

I feel like I'm going crazy. Like I have major issues. I feel like a nut requesting that the doctors do something. I feel like a weirdo when I ask at every visit if we need to see this specialist or the other. I feel like I'm a nuisance to the doctors, the nurses, the staff. I feel like the boy who cried wolf. I feel like I am constantly having to explain myself or justify myself. I don't want drama. I don't want attention. Often when someone asks how Kate's doing I respond "just fine" because I don't want to get into it all. I feel like people think I'm crazy. Like they talk behind my back. I know how often I hear, "Well, she looks healthy to me" or "she looks too good to feel bad" while I'm out and about. I can't help but wonder what people do think. I know it doesn't matter. Or shouldn't. I know a lot of this is my own insecurities. That is frustrating.

On the other hand, I have a daughter who is sick. I constantly am at doctor's appointments and hospitals. I shuttle back and forth to x-rays and pharmacies. I keep detailed records of every symptom, medication, office visit and test. I hope that someday someone will take all of these pieces and solve the puzzle. I give medicines and breathing treatments. I stay up all night. I deal with insurances and nurses. I am constantly on guard trying to decide what is "safe' for Kate and what is not. I constantly beat myself up for missing "clues". I wonder every single time she gets sick which choice I could have made differently to keep her well. I know that I shouldn't beat myself up over it. I know that I'm trying my best. I know that I'm not perfect. It's frustrating.

I worry about the future. About the effect this all has on Leah. The effect it has on my marriage. On our finances. I worry about whether or not the medicines will cause problems for Kate in the future. If the surgeries and procedures she has will effect her life. I wonder how much she will miss out on because of my fear. Or her health. I wonder if I could see the future Kate, what she would have wanted me to do. There is so much pressure. So much stress. So much frustration.

Selfishly, I don't want to change our lifestyle to adjust to constant medical bills. I don't want to have rules for Leah. I want her (and Kate) to be able to play on playgrounds. At the mall. To go to children's museums. To drink out of water fountains. To have play dates. I don't want to freak out at Leah because she shared lip gloss with her friend. I want them to be kids.

All that I want is to have a healthy baby. A happy and healthy family. All that I want is for her to have the absolute best chance at the best life possible. I want to know that I am doing what is best for her. Not too much, not too little, but just what is best. I want her to live a normal life. I want US to live a normal life.

Survival

2009-10-22T10:39:00.004-05:00

We survived the last 2 weeks. That in and of itself is a big accomplishment. Actually we survived it quite well. Last week we dealt with the piggy flu, which was less severe than the media portrays. Leah ran a bit of a fever Monday and Tuesday, but it never got above 102 degrees. Kate was snotty and had a little cough, nothing abnormal for her. Wednesday night Daddy-O and I went to see U2 and Muse. U2 is his favorite band and they only come through this area about every four years. Eight years ago we were on our honeymoon (much to his dismay) and four years ago, we didn't have the money to go. When tickets went on sale last year, the stars were aligned just right and we were able to get tickets. Daddy-O has been excited ever since. As the time got closer and the week unfolded, I was pretty hesitant about going. We did get to go and we had so much fun. It was nice to get out for a little bit sans kids.

Thursday morning Leah stayed home from school with Daddy. Daddy-O had asked off for Wednesday and Thursday morning, but the schedule had him off on Thursday and Friday. This turned out to be a huge blessing in disguise so he could help out at home. Kate and I had to be to the medical center by 7:00. I think I crawled into bed at 1:30 and was back out at 4:30. We made it down to the hospital just in time. We checked in and despite the quiz about swine flu we received when we arrived, we were left in "general population" with everyone else in the waiting room.

The waiting room was packed and I didn't want Kate to get anyone sick, so we stayed in the corner of the room with her confined to the stroller or my lap. As soon as we checked in, I went to call Daddy-O, only to realize that my cell phone was in the van that I had just valeted. I ran back out, had them pull the van back around and thank God for honest people, retrieved my phone. I could tell that the surgery schedule was running behind since the employees were griping about how busy it was. We made it back to the waiting room and waited some more. Thankfully Kate was in a pretty good mood for having nothing to eat or drink.

At about 9:30 they called us back. I got Kate changed into her baby scrubs and a fresh diaper. I met with the ENT, all of the nurses and PA's. Everyone was very nice and informative. While we were talking, the anesthesiologist walked up. Kate, my extremely clingy, has no problem screaming at you when you say hi to her, everyone is a stranger type of kid, reached out for him to hold her. It was as if God was saying, "I'm here. I've got it". It was especially nice since they weren't going to give her anything to take the edge off and he was the one who would be carrying her back for the procedure. He handed her back over while we waited for the OR to open up. They had all sorts of wagons and cars to play in while we waited.

Then came the dreaded moment. The big hand off. I knew that Kate would be upset. Seriously she is so "attached" she has yet to make it through an hour of Bible class without them having to come get me. When they took her she cried, but it wasn't quite as loud as I thought she would be. I think she was intrigued by all the doors and where they were going. I watched until she was out of sight and then lost it for a minute. They used a gas to put her to sleep and put her IV in after she was out. I guess they had trouble because she had a few sticks. I walked down to the cafeteria, taking a pager with me. I didn't eat that morning because I didn't have time before we left and I didn't think it would be very nice to eat in front of Kate. I called and checked in with Daddy-O and Leah, checked my email and sat watching the paint dry.

About 45 minutes later, I headed back to the waiting area and ran into the ENT who was headed in to find me. Surgery was done and everything had gone well. She said there were no big surprises and I should be able to go back and see her soon. As long as her oxygen stayed up we would be headed home in a few hours. She left and I returned to the waiting room. After what felt like forever, I asked how long it would be before I could go back. When they heard my last name, they informed me that the doctor had said she would walk me back to recovery. UGH!! All I could think about was her laying in recovery awake and really upset.

They walked me right back and the nurse met me with a, "well you are here". Kate was out at this point. The nurse said she did wake up long enough to ask "what's that" and point to the breathing tube. She then went right back to sleep. Thank God she didn't freak out. I would have felt SO bad. Her oxygen had dipped a few times, down to 90. I talked to Kate and tried to wake her gently. It became apparent rather quickly that she wasn't ready to wake. I rocked her for about 40 minutes before they moved us up to level 2 recovery. She woke up from the move and was in a great mood. She didn't like the pulse ox sensor on her toe, but that is pretty normal for her. We rocked and talked a few more minutes, watching her oxygen dip and bounce up. They brought her a bottle of pedialyte and apple juice. It was pretty funny to see her try and figure out what to do with a bottle since she's only had 2 or 3 in her lifetime. They gave her a dose of Tylenol with Codeine since we had a long drive home and would need some time to get hers filled. She did finally drink part of a juice box and we were on our way.

About half way home, I could hear her breathing very shallow and rapidly from the back seat. I turned around and her color looked funny. I pulled over and her face had red blotches all around it except for a very white ring all the way around her mouth. She was breathing okay, just short and fast. I called the post surgery nurses, left them a message and headed back to the highway. She stayed awake the whole way home (over an hour) and was very happy to see her sissy and daddy. Her color and breathing returned to normal as quickly as it had come on. She ate a little applesauce, played with her sissy and then went down for a nap. Just before she fell asleep her face turned red and her breathing did the same thing as before. We slept for about 3 hours and everything was normal again when she woke up.

At this point the nurses still hadn't called back and I was a little hesitant to give her any more pain medicine in case it was a reaction to it. A dear friend brought us dinner and Kate acted like nothing had ever happened. She had chicken casserole and a green salad for dinner and played until bedtime. I tried to call the nurses again and they wound up paging the ENT. She called right back and confirmed it was most likely from the anesthesia, not the pain medicine. We went ahead and gave her a dose to help her sleep through the night although she really didn't seem to be in pain. She slept great that night and so did we.

Thank you all for your prayers during this time. Things really could not have gone any smoother and I know that we owe that to you taking us before the Lord in prayer.

Really? Seriously?

2009-10-13T21:48:00.003-05:00

So, long time, no write. I know. Things have been crazy chaotic. We went to our appointment with the immunology clinic on September 17th. I am amazed at how smoothly the medical center runs. They are definitely a well oiled machine. We were called back, after waiting just a few minutes, for vitals and our room. Within minutes, the fellow came in and took a thorough history. Having ALL of Kate's records in one file (even had a calendar of EVERY illness, vaccine, appointment, etc.) sure came in handy. The fellow was very nice and knowledgeable. Once we had covered all the bases, she went and met with the immunologist to go over our case.

The immunologist then came in with a few more questions. She informed us that she wanted to rerun ALL of Kate's immune panels, as well as her vaccine titers and a few new tests (WBC function, etc). She explained that in using an average lab, they pool your results with any one else classified as human; age, gender and race ignored. Looking at Kate's results from our pedi, she felt that Kate had more of an immature immune system, than a deficient one, based off their clinic's numbers. They have actually done the research to break down the numbers for every age, down to the month, in children. Using their lab at the medical center, the risk of error would be less and they would be able to have a baseline to compare future labs taken there with.

She went on to explain that Kate didn't have the number of hospitalizations and some other symptoms to warrant infusions or any big treatment. She was much more concerned that her asthma and reflux were not being controlled. She really believes this is causing a LOT of her problems. We had SO many questions answered and left with an incredible peace knowing what we were looking at. She explained that she didn't expect to get any drastic differences in the new labs and made a game plan according to this. Basically we need to continue what we've been doing and get in to a GI doctor ASAP. She did change her Pulmicort back to Flovent to try and get her off of the twice a day, mandatory breathing treatments. She felt that part of her behavior problems were from not feeling well and partly from being pinned down for 20 minutes, twice a day. As she stated, "You only have so much tolerance for things and when it's gone, it's gone".

She had a respiratory therapist come in to show us the proper way to use a meter-dosed inhaler, spacer and mask. That was almost as informative as the rest of the appointment. I have used inhalers for years and had no idea I wasn't using them efficiently. Apparently the average adult only gets about 25% of the medicine per puff. You can imagine how effective this is with children. I knew that for Kate and myself, the nebulizer is much more effective, but didn't know why. She seems to be doing better with the inhaler with the new spacer and mask we received. She also added Reglan to her regiment to help with the reflux until we get into GI (we have an appointment in early December that we are trying our hardest to get that bumped up). She also asked that we get a clear x-ray of her chest when we thought she was well. She said she didn't want to over look if it could be Cystic Fibrosis, but she felt pretty strongly that it wasn't. She had pulled up all of her x-rays and hadn't found a one that was "clear". I'm not really sure how we are going to manage to get that, but we will try.

Within a few days, the doctor called with the lab results. It was fairly good news. Her IGG had come up from 420 to 520 and her IGG was still at 22. Her vaccine titers looked good and all of the other tests came back within normal ranges. The final word at this point is that her immune system is immature. She should outgrow this by age 4, if she is going to. They want to redraw all of her labs there annually to keep an eye on it.

Since then Kate wound up with a double ear infection, croup and upper respiratory infection. Her ear infection was just shortly after the immunology appointment and so we know it hadn't been there that long. It was pretty bad for being "new". She wound up on steroids, antibiotics and breathing treatments around the clock all because of an ear infection. With that, her pedi felt that she should be evaluated for having tubes put in her ears. She feels that she may be refluxing into her ears, as well as her sinuses, and that could cause problems and infections of its own. It took over two weeks to get over this all and for the wheezing to be gone.

Thursday Leah came home from school with a note that someone in her class had been diagnosed with the flu. Friday she woke up with a stuffy, runny nose. By Saturday she had a cough. It never really got bad, just didn't get better. Last night she was running a temp of 102 so I decided to take her in today, despite the fact she was acting alright. Her only complaints were that her neck hurt and that she was sad that she couldn't go to school or play with the neighbors. At about 12:45 AM, Kate woke up screaming. She was up until 4 o'clock this morning with a snotty nose and cough. She sounds just like Leah does.

This morning, Tuesday, I took Kate to her ENT appointment. I really liked the doctor. She was thorough and very down to earth. She explained that she didn't think that tubes would be a "cure all", but felt that they would help. If we could even eliminate one or two ear infections a year, that is that many less antibiotics, breathing treatments and steroid courses. She felt it would be beneficial to take her adenoids out while she was in there. She felt that this would save an inevitable future surgery. She does not want to take her tonsils unless she gets in there and they are really bad because that IS part of her immune system. She feels that this surgery will be one "piece of the pie" to getting her healthy, as will getting her reflux in control, etc. She said that while the surgery would be doing nothing to fix her lungs, she has had patients that have had much asthma relief from it. We are praying for that!

Since we are about to change insurances, surgery is scheduled for Thursday morning at the medical center. We have tickets for U2 Wednesday night and although we will be dragging Thursday morning, we need to get this done. I asked the ENT about Kate's stuffy nose and whether or not this would effect surgery (as she didn't realize it was already in the books) and she felt like it could go either way. She wanted me to have her check by the pedi when I took Leah in and see what they thought. Ultimately it would be up to anesthesiology.

I took the girls in this afternoon and the doctor decided to do a flu swab. Since swine flu is so common around here right now, they have stopped swabbing and are just giving medicine to people who are severe. Knowing Kate's history, coupled with a pending surgery, they decided it was worth it. The swine flu seems to be milder than what the media thought it was going to be. Leah's swab came back positive, Kate's was negative. The doctor is almost certain Kate is coming down with it too, but its not in her system enough to show on the test yet. Since Leah has had it for several days, is otherwise healthy and isn't really being "harmed" by it, they are letting her ride it out. Since Kate has a history with respiratory issues and getting hit hard by bugs and is scheduled for surgery, they started her on Tamiflu. I thank God that Leah did get it first so that we could test her to "see the future" with Kate. I have a feeling it would have been dismissed if Kate had gotten it first and I had taken her in this earlier in the illness. Surgery or not, catching it this early with Kate's history is an immeasurable benefit.

I called and spoke to the ENT about our findings. She said she wasn't too concerned about it since Kate hadn't even had a fever yet and since she was getting on the Tamiflu so quickly. She felt we would be catching it early enough that she wouldn't be too bad off. It is still up to anesthesia though. They should be assigning the anesthesiologist between 12 and 3 tomorrow and we can call and ask them what they think. Assuming she doesn't spike a high fever or have any worse symptoms, I think we will be a "go". There is always the chance we will get down there and they will not do it. The ENT warned me that swine flu is a "sensitive" subject with the medical center and that they are screening anyone that comes through the doors. She said that we would probably be quarantined and wouldn't be allowed in the waiting rooms. We would be taken directly to our room. Darn! Maybe we can avoid picking anything "new" up while we are there this way.

The surgery should take about 45 minutes and be pretty minor. The doctor made it clear that if her oxygen saturation is down at all after surgery, they would be keeping her overnight for observation. Knowing Kate and the fact hers tends to run low, added with the swine gunk, I'll be packing a bag, just in case. Part of me wants to postpone it, but I really feel we just need to get it done. Leah is out of school this week, so we don't have to worry about being here to pick her up, Daddy-O "coincidentally" was scheduled off for Thursday and Friday and I am not taking care of my nephew at all this week. On so many levels, it seems like the perfect time. We are praying that the anesthesiologist makes the "right" choice for what is best for her. If we don't do it this week, there is no guarantee that she will be well the next time it is scheduled. At least for now, she is having NO wheezing, which is very rare for her. I know that they will not do the surgery if she is wheezing. Waiting for her to get "well" for something, is worse than watching paint dry. I hate to put her body through too much, but am trying to focus on the outcome and am leaving the call in the physician and the Great Physician's hands.

I've had trouble deciding what to do about the U2 concert as well. They are one of Daddy-O's all time favorite bands. Eight years ago, they had a concert in town the same week we were slated to be on our honeymoon. He had a tough time choosing. Four years ago, they came back and he had just been laid off and we didn't have the money to go. I promised we would go this time and we've had the tickets since the minute they went on sale. I REALLY don't want to miss it. Ask me if I'd have voted differently on Friday! It's definitely shaping up to be a busy, crazy, chaotic week!

Despite this all, God's timing continues to be perfect. Our babysitter for tomorrow didn't cancel despite the girls illness, the fact that we caught Kate's SO early and can treat it proactively, having Daddy-O scheduled to be off for two week days (this never happens) especially to have it line up with the surgery day AND we received a refund check from our insurance company at EXACTLY the right time. God is good all the time and ALL the time God is good!!!!

Please join us in praying:

-Leah would continue to get better

-Kate would not get any worse or run any fever

-Kate would get over the cough and runny nose quickly

-Daddy-O and I would stay healthy

-if it's God's will, the surgery will happen on Thursday

-the surgery would go successfully, with little pain and complication

-the surgery would bring Kate some relief

-thanking God for his blessings and timing

5 More Days

2009-09-12T23:46:00.003-05:00

In five days we go to our Immunology appointment. It couldn't come quick enough. I've spent the last few days putting together a detailed, chronological, color coded binder of ALL of Kate's history. After getting her prescription history from the pharmacies, I realized how happy I am to have this appointment. In her 16 month life, she's had over 50 prescriptions. Now keep in mind, 75% of her illnesses have been "viral" which means there is nothing to be done for them. Then figure for every prescription, there was a doctor's visit, not counting the MANY visits without perscriptions. And we wonder why we are broke?!?!?

I took Kate in to the pediatrician last Friday to have her lungs checked before the holiday weekend. The doctor said she sounded worse without the stethoscope and it was mostly upper respiratory. I let her know about the appointment downtown and she agreed that we should get the second opinion. She made it VERY clear that people who need them don't even get appointments with this doctor. She seemed to think it was quite odd it "fell in our laps" too. She recommend we continue breathing treatments to prevent anything for settling. We've been doing that and it seems to have passed. 10 days later, she is still having some fever, but nothing else and she is not NEAR as cranky.

I've grown increasingly concerned over her behaviour lately. Several people have commented on how she seems to feel so bad. She has started having what I can only describe as rages. She gets so angry and will pull her hair, bite, scream, or hit. One day last week she did this for almost two hours and at one point even ripped off all her clothes, diaper included. She surprised herself, in that she didn't know she could take her own shirt off. It worries me that either, A) her meds are causing this behavior or B) she really feels that bad. I'm afraid it's going to become who she is.

I am a worry wort. It's something I've struggled with my WHOLE life. I am SO thankful that this appointment has been given to us, but on the other hand, I'm worried. I can see two "logical" reasons that this appointment would have "fallen" in our laps versus the March 2010 appointment, when there are many others that could probably use it more than us. Reason 1: There is some piece of information that we are missing that could be important for Kate's health now. This scares me. It scares me that maybe God thought this was big enough that it needed to be dealt with now. Reason 2: God knows what a worrier I am and is sparing me (and my family) from having 7 months of worry. The truth is it doesn't matter what the reason is for the appointment, God is in control and has a plan and I have to learn to sit back and wait for Him. I know that God holds Kate in the palm of His hand and there is NO other place I would have her (or the rest of us) be.

15 Months Old

2009-09-12T23:13:00.024-05:00

Kate, you turned 15 months old on July 25th. This month you:

-Weigh 22 pounds, 13.8 ounces (50%)

-Are 31 inches tall (75%)

-Have an 18 1/4 inch head (50-75%)

-Wear mostly 12 month clothes and size 3 diapers

- Wear size 3 or 4 shoes

-Really love swimming, especially in the baby pool without a float

- Enjoy floating in the lazy river in a big tube

-Are still a fairly mellow kid

-Have the cutest round face and look just like your mommy did at this age

-Are ALWAYS on the go. You would go from sun up til sun down if we let you.

-Think that anything with a loop is a necklace and will wear it as such

-Have started assisting when we dress you

-Mind simple commands most of the time

-Still have a curious, onery side too

-Have started talking more and say daddy, thank you, welcome, JT and mommy often

-Were diagnosed with asthma

-Have continued to be sick a lot

-Are happy and energetic 95% of the time, despite being sick. Everyone tells us you look way too good to be as sick as you have been.

-Think that anything you can sit on is a horse and worthy of riding

-Love to climb up the front of mommy or daddy to do a flip

-Enjoyed your first 4th of July parade, despite the heat

-Love going for walks in your cozy coupe car

-Are still best friends with your sister

-Want to do everything your sister does

-Enjoy riding on anything that moves, especially carousels

-Do NOT enjoy being told no
-Can throw some pretty ugly fits

-Visited your first ranch

-Were not too fond of cowboy boots

-Are a thrill seeker and will try ANY thing once

-Loved the zip line at the ranch. (I am pretty sure it was not designed with infants in mind)

-Love water and water slides, no matter how big they are

-Have NO fears other than being away from mommy

-Will ask for "more" as soon as you quit choking on the water

-Would ride over and over again if your parents didn't get so tired

-Are best buds with Isaiah. The gap between your ages is getting smaller and smaller.

-Tend to bully Isaiah and even beat him up sometimes

-Have finally noticed the TV and will watch it for a few minutes here and there

-Are quite likely to sit still if food is involved (ie. popcorn)

-Share your sister's love of dress up

-Are starting to pretend more and more

-Have great fashion sense. You probably got that from your mom! :)

-Never miss a beat. You know everything that is going on around you.

-Are very allergic to mosquito bites and have had several episodes of swelling up because of them. (see her index finger? That was a few days old)

-Went to your first circus. Although you weren't too interested in the show, you loved the snacks and being our own personal clown.

-Are SO full of life and excitement

Kate, you add so much excitement and laughter to our lives. We are SO blessed to have you.

The Latest

2009-09-01T22:23:00.002-05:00

Has it really almost been a month? WOW! My success rate is getting worse. Things here are plugging along. Kate fought a tummy bug for the last 3 weeks. She was really bad off for about 10 days and then it was come and go for the next week and a half. She has officially quit nursing and I have officially quit pumping for nutritional purposes (only occasionally for comfort). She has been pretty cranky this month. She has been evolving into a two year old way too quickly for our liking. Fits, fights and talking in sentences. She is growing up quick!

Speaking of growing, Leah is turning has completely lost anything remotely toddler that she had left. She is constantly spelling, trying to read and has mastered the teenage attitude. Her behavior has been MUCH better than it was a few months ago. She has spent a lot of time soaking in the last days of summer, swimming and playing with our neighbor, Ava. As of last week, Ava's older sisters all went back to school, leaving Ava lonely. No later than 8:00, every single day, Leah is in asking if they can play. They spend all day together and they are very excited about starting school together on Tuesday. The other day I took her to buy school shoes, as she has lived in flip flops all summer. Her foot had grown 2 whole sizes since I had last bought her shoes! She is becoming more beautiful daily, inside and out.

The past week has been one of the most productive weeks of my life. I cleaned out and organized every room and closet in the house, purged off season and "too small" clothes, pulled all of the hand me downs out of the attic, wash and ironed all of the clothes for summer, fall and winter, cleaned the house top to bottom and we disassembled, moved and reassembled a huge play structure we were given for the girls. This was all on top of the "normal" jobs of the household. It felt GREAT!

About two weeks ago, I chatted, via email, with the mother of a sweet boy who has the same deficiencies as Kate. It was very nice to get some advice from a mother who has dealt with this all and I appreciate her contacting me and sharing with me so openly. After talking with her, I realized that I still hadn't received a copy of Kate's lab results and had them faxed to me. I soon realized that Kate's counts weren't that far off from her son's, who is on IVIG transfusion therapy. This left me with all sorts of questions and concerns over the coming flu season. I already had it in the back of my mind to get a second opinion. Later that day my cousin, whose daughter has the same deficiencies as Kate, called with a report from their immunology appointment that day. Even later that day, my mother-in-law called and explained that she had been at a doctor's appointment and mentioned Kate's issues. This doctor highly recommended getting a second opinion from the medical center and referred us to two pediatric immunologists, one being a Dr. D.

I took this third knock as my "sign" that I should go ahead and schedule a second opinion. While I know that Kate's case is not severe and is probably even mild, I still have so many unanswered questions. I also worry (especially since she's had such a rough time in the "off season") that by the time we get referred to a specialist through our doctor, she will be really bad off. At that point, I know from experience, if we can get in, it will be a game of treating symptoms and illnesses to get her well enough to figure out what is going on. I would much rather get her in while she is somewhat "well" and see what we can do to help keep her that way. Ideally, a second opinion would tell us that we are already doing what we can and we would continue care with our pediatrician. Even in this case, that still gets our foot in the door as an established patient, in the event things go south. Worst case scenario, we waste the day, hopefully get some questions answered and go on our way. I'm willing to risk that!

I wanted a doctor close to home, but came to the conclusion that we have one of the best medical centers in the world in our backyard. People travel across the world to be treated here. Why would I not utilize it? I called the number that I was given by my mother-in-law and was surprised to hear Dr. D, herself, on the other line. Luckily it was her voicemail, but it was obvious I had been given the number that the other doctor uses to reach her at. I left a message, stammering and stuttering, letting her know that I had been given this number, was sorry to have used it and was hoping to get an appointment to have my daughter seen.

I then googled her name to find her office number. I called and was put through to the mass appointment scheduling desk. There I learned that the next available appointment was March 2010. I decided I better go ahead and schedule it in case we needed it, so we wouldn't be put on the end of the list later on. I figured we would have plenty of time to cancel it if she improved. I then spoke to my cousin again and got her immunologists info. Called them and they didn't take our insurance. Called another friend and got the doctors info and was able to make an appointment for mid-September.

Fast forward to yesterday. I was upstairs visiting with a friend when the phone rang. Daddy-O took the call and almost forgot to give me the message later that day. It was Dr. D who called. He explained what we had called about and she was totally cool. She stated that we needed to call and set an appointment, that it would probably be for March next year and register in the system, all which we had done. She said to then call her personal nurse at this number and explain to her that we had spoken directly to Dr. D and she would move the appointment up for us. Sounds simple, but seriously? What are the odds?

I called her nurse, who was not only sweet, but super knowledgeable too. She explained that they were a teaching hospital and walked us through what to expect at our appointment, covering every detail. She set us up with an appointment the same week we were scheduled to see the other doctor, in mid-September. She asked a couple questions about Kate's history and immediately started listing tests the doctor would want done that day (one of them being one that I had asked our doctor about). She said to allow 4 hours for the appointment plus lab time. I was SO shocked, I didn't even realize that I was agreeing to be 2 hours (with rush hour traffic) from my house at 8:00 in the morning for this appointment. Beggars can't be choosers.

The way it all played out so flawlessly tells me that there is a MUCH greater hand orchestrating our lives. What a great place to be, securely in our Father's hands! When the nurse set up the appointment it wasn't with one of the doctors that had been recommend. I felt silly asking, but inquired as to whether or not the doctors all worked together since this is a clinic setting. It was then that she informed me that the doctor we had an appointment with is actually the Head of Pediatric Immunology for Texas Children's. As she stated, "You are in GOOD hands". If she only knew. WE are in the BEST hands!

I am totally at peace knowing that God lined up this appointment and am excited to get this second opinion. While I fully trust our pediatrician, I feel like I need some questions answered and a little more specific information. As you all know by now, I don't deal with unknowns very well. I know that we can rest assured in what we find out. God has cleared this path for us and I am excited to head down it.

I don't think the appointment will be any too early either, as Kate is on the upper respiratory bug fast track again this week. Sneezing, sniffling, coughing, hoarse, fever, fussy, wheezing.. oh yeah, we've got it all! I'm sure by Friday we will be on around the clock breathing treatments. Please pray that we are able to keep her off of oral steroids during this, as I know that those will throw the upcoming tests.

I PROMISE I will get to Kate's 15 and 16 month posts, Leah's 5 year post and some funnies real soon!!!! I'm afraid I've bored my audience and they've all left.

Catching Up

2009-08-17T19:36:00.003-05:00

Where did I leave off? Oh, yeah, weaning and whining...

Well, Kate hasn't nursed since my last post. I've had to pump to try and wean myself, but am down to once a day and hoping to be done with that in a few days. She still hasn't taken to drinking the expressed milk unless I hide it in her yogurt drink, with her probiotics. It's like a baby smoothie.

As of late Saturday it was obvious that Kate had come down with a stomach virus. She had the type of diarrhea that she could be dry one second and wet up to her armpits the next. Nothing but water, very acidic water. Because of this problem, coupled with her propensity for diaper rash, she was miserable. After the first 36 hours of stomach cramps, her tummy seemed to feel fine. The rash was her biggest complaint. We followed all the typical stomach virus advice. We followed the BRAT (bananas, rice, apples and toast) diet, changed her diapers often and immediately (due to the nature of the problem, this wasn't optional), used an antacid directly on her skin, rinsed her bottom with water instead of using wipes, coated her up in Balmex, Butt Paste, Desitin and corn starch, watched closely for dehydration and prayed that the rest of us would avoid it.

By Monday the diaper rash had gotten out of hand. It was up to her armpits. Every place that was touched by the stuff was burned instantly. She had spots that were bleeding and was just in a lot of pain. I called and asked for something stronger and got the whole, "It's been going on too long, she needs to be seen" spiel. If I could get through to the doctor, instead of the nurse, I am sure she would have called something in, avoiding more exposure. After all we had been in the week before for a "well" check. Wonder where she got the tummy bug? The doctor checked her out, said it was acid burns and wrote for a prescription of Happy Hiney (Aquaphor/Questran). She wrote for a big tub with 5 refills, so hopefully we can avoid the trip in next time. By Friday, she was finally feeling better and more solid. Although she is back to normal, she still cries about having her diaper change. She must have had some serious pain.

Since she was waking several times a night for diaper changes, she got in the habit of getting up every night. The last 2 nights she has slept the whole night through. The diarrhea, constant diaper changing, multiple loads of laundry (that wasn't the type that could wait), pumping 3+ times a day, 2 breathing treatments a day, made for a cranky mommy. I think we are finally back to normal for a few days.

On top of all of this, things are crazy busy at work. We have an order of 525 shirts for a school, we have a bunch of school orientations that we are setting booths up at and we are trying to get our spirit shirts out to as many schools as possible with the new school year just around the corner.

We are trying to enjoy the last few weeks of summer, as Leah starts school in a few weeks. She will be going a half day, four days a week. She is ready for the structure and a break from home (the babies) and I know that she will do well and thrive in this new environment. She will be in the same class as our neighbor, Ava, which will help her settle in. It will also be a huge blessing to be able to carpool.

While I feel like I am getting more of a "grip" on things, I still am having trouble with keeping my head above the water. I've been so emotional and cranky lately. I think I'm going through some hormonal changes, with the weaning and all, and I know a big part of my problem is exhaustion. Even when I sleep, I know that my body is not completely letting go. I lay there tense, worried about whether or not Kate's going to wake up or making lists of the things I've got to get done. Many times I've met Daddy-O in the stairwell on his way to work, while I'm headed to bed at 4 in the morning. I have got to get myself (and my kiddos) on a better schedule, especially with the start of school coming quickly.

I wrote before about how I felt drained. Daddy-O and I discussed the church issues and decided that Kate would just have to go to class with us. We decided that we would have to let her be a kid (while still trying to be respectful to those around us) and not worry about every noise she made. We went to class and within 5 minutes, Daddy-O had her in the hall. Between class and service we decided that we needed to discipline her behavior (mostly loudness) and take her back in to class or service. Otherwise it is a losing battle. We tried this approach in service and it went okay. I took her out once for a spanking. She spent most of the time with my hand covering her mouth. She threw cheerios and crayons every which way and then tried to fetch them. I felt like all eyes were on us, despite the fact we were on the back row.

I'm sure people wondered why we didn't just take her to the nursery. I'm sure she disturbed many people, including us. My hope and prayer is that each week it will get better and that maybe some day I can actually engage in a service again. By the time service let out, I was exhausted and more drained than when we arrived. I'm used to going to church to get "recharged" and these days I leave feeling worse than when I arrived. It's hard enough to get up and get everyone ready and out the door on time. The whole service I felt this internal battle and a voice booming, "It's not worth it. Just stay home. Do you think this helps? Don't you feel SO much better? Aren't you glad you went through all this trouble for this?". I know that Satan would love for me to buy his lies and quite honestly, I'm pretty close to it. It's not worth it. I don't feel better. I usually leave bitter and angry. What once was the highlight of my week is now a really sore subject. I hate that. I know that it is the right thing to do to keep going, but man, is it hard sometimes.

I'm also struggling with Kate in general right now. One one hand she is SO normal. If I was going to be honest, she's probably above normal. She talks and communicates very well. She is sharp as a tack and since she's my second, I know this is not always a great thing. She appears to be physically normal. She runs, jumps, climbs, laughs and plays. I'm having a horrible time knowing where she's normal and where she different. One minute I feel like I'm being an overprotective, hypochondriac who needs to just get real. Maybe I should just send her to nursery. I know that if I do this that we will be out the next week with some new illness. Any of you who have kids know how frustrating, draining, horrible it is to have a sick baby. It's SO consuming. The last thing I want is for her to be sick again and I know it will happen. But don't all kids get sick? Isn't this a part of having kids?

I feel like I don't have the right to ask for special favors or help at church, after all so many people have kids that are FAR worse than Kate. I feel like we are supposed to live life as normal, but what does this mean with a kid like Kate? Normal isn't so easy any more. Every play date, outing, shopping cart, restaurant high chair, public bathroom, family member, becomes a chance at a new illness and it makes my mind crazy!!! I am constantly second guessing myself, "Should we ________? If we commit to _____ will she be well? If we do go _______ is it going to expose her to something?". Every turn there is doubt and regret. I've struggled with a lot of this with her being sick in the past, but this "diagnosis" hasn't helped. It is so hard to know where to be cautious and where to loosen up. I feel like I haven't been able to just relax. I know that the only way I'm going to feel this peace that passes ALL understanding is from God. I know that I need to just let go, but it is just so hard sometimes.

On My Toes

2009-08-08T00:02:00.002-05:00

Well, she keeps me on my toes, that little Kate. Last night after nursing well at bedtime, she went to sleep. She was up at 2:00 am, just as I hit publish on the last post. She was running fever and fussy, so I gave her some Motrin. She asked to nurse and latched right on. Once again, no problems. She was awake in my bed when Leah joined the mix at 3:30. Her legs hurt (maybe from 3 straight hours of gymnastics) and she couldn't sleep. Kate nursed about 3 times between 2 and 5 when I finally kicked both girls back to their own beds on an unnecessary roughness violation.

I woke up feeling like I had been hit by a train, but confident since I was, again engorged. Maybe that's what I needed to boost my supply back up. But alas, she wouldn't latch this morning. In fact today, we were 0 for 3 on our norms. I offered often, but was rejected. A few times she even asked for it, but then wouldn't try. I don't know. She is SO confusing. She did have a fever all day and some diarrhea that got much worse as the night went on. I am guessing that it's from the vaccines Wednesday. She's also still cutting all her eye teeth. And she has a horrible (see: lit up like the fourth of July sky) diaper rash again. I still feel like there is something else underlying though.

If ANYONE out there has had experience like this (or not), I am asking for advice. At this point I am not even 100% sure that it is all that beneficial, especially since she is not taking much of the expressed milk. She did take several ounces hidden in her yogurt drink today! However I don't know that I am ready to be "done" yet. I would feel really guilty if she got to feeling better and came looking for it, only to find we were, indeed, done.

Going Grey and Becoming "One of THOSE people" All at Once

2009-08-06T23:56:00.006-05:00

Well, if I don't wind up with grey hair after this week, I may not ever. Saturday we spent the day sleep deprived and sore from our trek to Schlitterbahn. Daddy-O left to work on his motorcycle while I refereed two very cranky girls. Saturday night, Kate screamed from 2:30 am to 5:30 am. Daddy-O and Leah headed out to church Sunday morning while I, willingly "took one for the team" and stayed home with Kate. I knew that I just couldn't do it. I haven't sat thorough Bible class in ages, nor a sermon since Kate was very little. She has been out of nursery and Bible class for so long that she goes APE and screams bloody murder until the attendant tracks us down. Seriously, last week an adult from one hall down came to see what the problem was and if they needed help. Unfortunately, our church doesn't have a "cry room" or training room and the parent nursery doesn't have sound in it. There are beautiful, plasma TVs lining the hallways (I guess so that you don't miss the sermon if you are roaming the halls?). I used to sit on the floor just outside the auditorium doors so that I could "watch" the sermon, but since Kate is training for her first marathon, this has become a futile task. Instead we play chase...or sit in the nursery....or walk the foyer.....or sit in the car. It becomes increasingly more irritating every single week. I knew, this day, running on such little sleep and patience would prove to be a bad idea for ~~her bottom~~ my nerves.

We chilled at the casa until church let out and we finished her breathing treatments and then met Daddy-O at Mammy and Pops house for lunch. We had a nice lunch, with a little birthday celebration for Leah, and a wonderful, homemade ice cream cake. We played and visited until a little after 3, then headed home for naps and a quiet afternoon. For dinner, we met up with Brandon, Erin, Micah, Lisa and Isaiah and then played in the fountains. This lasted about 10 minutes, which included many fits, "NO'S", bathroom trips and sighs. The girls were horrible. It was home and straight to bed.

Between Thursday night's nursing issues and Sunday night, I'm not sure what our ~~batting average~~ nursing total was, but I think we hit most of our "norms". We may have skipped one or two. By Monday, Leah's birthday, I noticed that Kate had a new tooth. All four of her eye teeth were working their way through. This might explain the fussiness and fussiness there was. I didn't feel well Monday. My throat was scratchy, my eyes itched and I was fussy. Leah on the other hand was a total ~~kiss up~~ angel. I tried to pull it together for the birthday girl. We slept in a little, I made her birthday pancakes, she opened presents when Daddy-O got home from work and we then headed over to her preschool to put down a ~~sacrificial young calf~~ small deposit for the school year and secure her spot. We got there and unloaded, only to find out that the staff had gone for an early lunch. We hopped back in the car and headed to Wal-Mart to pick up some things for a cake...and some lunch...and some presents I hadn't gotten yet that she totally saw in the cart. Mother of the year, I know.

We headed home to bake cupcakes. I nursed Kate and put her down for a nap while I baked cupcakes. Got a call from mom about some work things that needed to be done ASAP. Got a call from the preschool director stating that they were back in the office and would be there for half an hour if I wanted to swing back by. Or I could come Wednesday. I realized after telling them that I would be there Wednesday, that the girls had their well checks that morning and I would have Isaiah. I called them back on my way out the door. Got there. Paid for school. Filled out papers. Got home. Iced cupcakes. Wrapped presents. Did some work stuff. Got Kate up and headed out to Incredible Pizza for Leah's birthday dinner. We had a nice dinner and had fun playing games, putt putt golf, laser tag and racing go-karts. Leah had fun, Kate was a brat. She screamed, she cried, she hit other kids. She was a mess. She is so out of sorts these days. She was climbing up the slides. She jumped off the top of the play equipment. She ran us rugged.

Tuesday morning, Leah woke up and wanted to play with her new sidewalk chalk and paint brushes. After arguing that it was too hot, I gave in and took the girls out to the driveway in grubby shirts. I gave them a bucket of chalk, four cups of paint and a brush each, and told them to have fun while I ~~attempted to drown out the noise~~ mowed the lawn. They had a blast for the first 10 minutes, eating chalk, painting the ground and each other. Then the paint dried...and it began itching...and Kate was wandering the street...and it really was hot...and it wasn't too much fun anymore.

So I was sweaty, hot, cranky, not feeling well, and had only 1/3 of the yard done. The girls were covered in paint, hot, cranky and wanted in the house NOW. I hollered at Daddy-O, who grabbed the camera, to throw them in the shower and I would be inside in just a minute. After a shower and a bath to get the "washable" paint off, the girls still had "spots" all over them and both of our bathrooms looked like a rainbow threw up in them. I got the girls lunch and settled in for nap/quiet time and snuck out with my mom for a business meeting. I got home in time to finish some work and get laundry going. I think Kate nursed once this day and continued with her fussiness. I began pumping, not knowing what else to do. By now, I was getting real emotional about the whole thing. Sure she is 15 months old and I had NO intention of nursing her this long. However, she does have 2 immune deficiencies and BOTH of the immuglobins she is already short on are found in breastmilk. And the amount peaks after 13 months. And it's almost flu season. And I didn't know that it was going to be the last time. AND she IS my last baby, for crying out loud!!!!! And for the record, I was!

Not to mention the fact that I was engorged and hurting pretty badly! So Wenesday morning, I got up early, got the girls up and ready and wound up pumping again. Kate wanted nothing to do with nursing, again. She wasn't even trying to latch. She would just stick out her tongue and shake her head "no". We were out the door, with Isaiah in tow, by 9:30. We sat in the waiting room at the pedi's office for over an hour. I hate that Leah's birthday, and consequently well checks, fall during the "back to school run to the doctor for shots and physicals" season. I always have to schedule her appointments 6 months in advance (hence the appointment on a day with Isaiah) and it is always a zoo.

So after an hour we head back into a maze of measuring, weighing, blood pressure, temperatures, hearing tests and vision tests. We cram our wagon and all three kiddos in our room and bust out the cheerios and toys. We go through the questionnaires for both girls and wait for the doc. Leah needed to pee, so we took the wagon and babies to the bathroom. On the way back, Leah was walking behind me, while I pulled the wagon, and apparently I "ran her over". She wailed and threw a fit while everyone stopped and stared. We ran back to the room to hide. The doc comes in and does a quick check of both girls, while halfway listening to my concerns about Kate's not feeling well and weaning. She informs me that some kids wean at this age and that nothing is wrong (ie. ears, throat, etc.). Normally if I ~~pull some Hypochondriasis~~ present a concern about a certain area, she will recheck it, just to be safe. But not today. When I inquired about what would happen if she isn't getting IGG and IGA from me, she brushed it off, because it "wasn't really that much" and "wasn't worth pumping for". Typically she is SO patient with us and takes her time, going above and beyond the call of duty. This appointment I felt rushed, out of sorts and like she wasn't really listening. I don't know if she was having a bad day or what. Granted the babies were tired, and noisy, and ready for lunch and a nap, but still. Note to self: Well checks on the same day are NOT a good idea and will NOT save you any time.

As she was leaving, I had to pull her back in for my list of questions. We got through those in record time and sat waiting for the vaccine portion of our visit. The nurse came in almost immediately, which is unheard of. Actually, there were two. One for each girl. One stuck Kate three times in the leg, while the other squirted a flu vaccine up Leah's nose. While Kate wailed, Leah continuously rubbed it in. "Kate-Kate, Sissy didn't have to get ANY shots.....No.....not ANY at all!". I stuck a sucker in both their mouths and maneuvered the wagon back through the narrow hall, with Leah in front of me this time. We got to the check out and had to wait for someone to come help us. I got a copy of Leah's shot record and vision/hearing tests for school and we wandered out. At this point, I realized what all the rush was about. It was 12:30 (our appointment was at 10:00) and it was catered lunch day at the office. The whole entire office staff was sitting in the waiting room eating barbecue on TV trays. Nice! We were, characteristically, the last ones to leave and were quite possibly making them all late to lunch. My BAD!

*Note: I LOVE our doctor and while I wanted to scream and cry on Wednesday, she has done SO much for me and my family. I think I am WAY ~~crazy~~ depressed, overwhelmed and tired this week and I may have just caught her on a bad day as well!

We head home, trying to keep the babies awake, fix lunch and get them all down for naps. Kate still wants nothing to do with nursing or drinking expressed milk. She, ironically, acts like it's the nastiest thing she's ever tasted. She has a rough time going to sleep and I even try to nurse her again, once she's in the sleepy state. I'm feeling scores of emotions at this point. Relieved, after my 15 month term, I'm free? Stressed, is she going to be really sick now? Confused, what in the heck would cause this? Irritated, how many times have we done this before? Torn, is this the right thing to do? Crazy, am I one of THOSE crazy people who is going to be nursing a school aged kid? Stunned, I didn't know it would be this hard! Alone, has anyone else ever dealt with this and am I making to big a deal out of this? Enlightened, I DO have control issues. Sad, that special, unique bond we had is gone.

I think I was already hormonal, emotional, sleep deprived, not feeling well, but this was a hard bite to swallow. I wasn't ready. I didn't know that it was going to be the last time. What was our "status" or relationship going to be like now? I felt rejected. The bubbly little girl sticking her tongue out and shaking her head "no" cut WAY deeper than I expected it too. I called the Lactation Office at the hospital where I had Kate. I knew I would be getting the "hippie, nature spiel", but needed to talk to someone who might understand. Or at least help me sort through the clues as to whether this was Kate's way of weaning or simply a nursing strike. They never called back. I called Lisa, who encouraged me to keep pumping and even let me borrow her nice, electric pump. She shared that she regretted giving in to outside voices to quit.

I've realized this week that I am empty. Spiritually, emotionally, physically. I need sleep. I need peace. I need God. Kate's health issues shouldn't and realistically AREN'T keeping me from my walk with God. My religion or lack there of, has become my spirituality. I have to fix that. Digging into the good book here at my home isn't going to expose her to anything but love, kindness, patience, peace, self control. All the things that I am deficient in right now. I've snapped at my kids and husband WAY more times than I'm okay with this week. I don't like who I am right now. And I we are going to fix that.

Today I got a hold of the lactation consultant that taught our breastfeeding class and whom I worked with after my uterine ablation . She is a very sweet gal and was so encouraging. She seemed to think that Kate's problem was temporary since she didn't really gradually wean and she has had so much going on (ie. vacation, teething, vaccines). She said to continue offering the breast, pumping and offering the expressed milk, even if we had to mix it with something and like a ~~nutcase~~ desperate mother, I even tried adding strawberry syrup to it (strawberry milk, right? Yeah, not so much).

Her explanation for the funny look Kate gives after tasting it makes sense. For 15 months, she received her milk straight from the tap. She's never had it in a cup before. It doesn't "match" in her mind. Also, things can taste very different depending on what part of your tongue they touch. Since a nipple is able to reach further back than a cup, it truly does taste different to her.

After talking with her and Daddy-O, I decided that I would continue to pump and offer for a few days. In that time if she kept refusing the breast, but drinking the expressed milk, that would be our new routine, as much hassle as it is. If she didn't drink the milk that was expressed or attempt to latch on, we would count our blessing and move on. At nap time, she latched on and nursed one side, but not the other. A little improvement. Tonight after a big day and a big dose of Motrin to ensure that pain wasn't the culprit she nursed both sides fully, while playing with my hair, as if nothing had ever changed. I am not sure what tomorrow will hold, but for tonight, I'm finding peace in our decision and leaving the rest at God's feet.

I may be one of "those" crazy, hippie folk that I used to make fun of, but I ~~hope~~ pray in the end, I've done what is best for my baby.

New Braunfels and Schlitterbahn

2009-08-05T16:59:00.017-05:00

My parents made plans to take some family friends to Schlitterbahn in New Braunfels last Friday. Their plan was to be at the park at opening (10 am) and stay until closing (8 pm). They invited us to go and there was born a plan. You see, Lisa and I thought we could do the babies a favor by driving up on Thursday night, staying the night at a hotel (with a voucher I had) and meeting the family and our husbands at the park at 10 o'clock on Friday. While planning we decided there was no reason to drive up just to go to bed and decided to leave around lunchtime. We ate lunch and headed out. I didn't nurse Kate before we left because I figured she would nap once we got there and we were in a hurry. So off we went. Also, our camera bit the dust so we picked up a Nikon D60 so you should see a little improvement in our photos, I hope!

It wasn't long before one was doing this...

While the other did this...

There was some lovin' and some fussin'

And finally some of that...

Just in time for this...

Which woke everyone back up

We made it to the hotel and got unpacked. I tried to nurse Kate, but she wanted nothing to do with it. I chalked it up to the fact that she had just witnessed me putting together the pack'n'play and she knew I was trying to get her to sleep. We decided after a few minutes of kids playing with the phone and refrigerator and jumping on the bed, that we needed to get out of the room.

So we headed out to the San Marcos outlet mall with a pit stop at Cracker Barrel because according to Leah, "that is where you eat on trips".

After dinner we stopped at a few stores and found a few good deals. We stopped by the bathrooms for diaper changes and found a carousel.

The kids had fun riding, until...

It stopped...

And then they got angry.

So we followed the beautiful Texas sky back to the motel.

And let the kids swim for a bit.

At 10:30 we started getting kids in bed. Kate still wouldn't nurse and by this time I was very engorged. I kept trying and she was just plain upset. At one point she head butted me and put my tooth through my lip. She then found herself in the playpen. She was so overtired. I let her cry for a few minutes, while I cried on my pillow. I hurt (my lip and chest) and I was a little stressed not knowing what to do. I didn't have a pump or pads or Advil or cabbage. After 15 months she sure picked a prime time to quit on me. I eventually gathered myself and tried again. She nursed well and went to sleep.

We all slept pretty well until 7:15 when Isaiah fussed and woke us all up. He, then, went right back to sleep. The girls were all up though. Since they had foiled our great plans, we got our swimsuits back on and had breakfast (which Kate nursed fine at)...

then loaded up and met up with the family...

And headed here...

We got in and found a "home base" for the coolers, stroller, wagon, towels, etc., got lockers, tubes and sunscreen and then split up. My group headed to one of the big canal rides. If you have never been, they have these rides that are like a big concrete river that have drops and tunnels. They take about 45 minutes to ride and are filled with water straight out of the river....very cold!

You even wind up in the river at the end of them. We hopped in line for one and waited about 45 minutes. Kate was tired until she hit that water. They have tubes with mesh nets for the kids so that they can sit in the hole of the tube without falling through. She LOVED it. We rode rides like these and played in the kiddie section, stopping only for lunch, until 5:00 pm. She went non-stop that whole time. Finally at 5 she slept for 45 minutes and then went back at it.

Leah had been to this park before, both in and out utero, but was too young to remember it. She loved it. She was a real trooper, never napping and never getting fussy. Kate was a true maniac though. These rides are not meant for small children and are rated "high thrill/deep water". That girl learned after the first slide (mind you, at 15 months) what the top of the drops looked like and would stand up and "surf" in her tube until the top, when she would "hunker down" like a ground hog, at the very last second. There was a lot of signing and screaming for more. Every time she saw a life guard along the way she would fuss at them thinking the ride was over. The life guards began remembering her and wouldn't even bother touching her tube. She was too fun! She is SO intense and loves a big thrill. Both girls had SO much fun and we had a blast watching them. I obviously couldn't take our camera with us, but Micah took his High Def video camera with a water proof case so we hope to have some great shots on that.

At 7:45 pm, 15 minutes prior to closing, we all hopped on one more 45 minute chute ride as a group. We then loaded up for the trek home. Kate slept about 45 minutes of the 3 1/2 hour drive home, but Glenn and Leah slept the whole way. We got home and in bed around 2:00 am, but it was SO worth it. We had a blast!

Clowning Around

2009-08-05T16:22:00.012-05:00

On Thursday, July 23rd, we were able to see Cirque du Soliel's Saltimbanco show. We were given some tickets for a suite. The show was great. This was the fourth show that Daddy-O and I have seen, but was Leah, Kate and my brother, J.T.'s first. J.T. and Leah were super impressed and watched every minute with their jaws on the ground. Kate enjoyed the snacks and running around the suite. In hind sight, we should have called the sitter for her. I shouldn't be allowed to vote since I wrangled kids for the majority of the show, but it wasn't my favorite. I think a lot of it was the distractions. Even more disappointing was that it was in a basketball arena instead of the classic Cirque tent. I felt like I lost some of the connection with the performers because of the distance. Regardless, it was still a fun experience.

On Friday, July 24th, Mammy and Pops took us to Ringling Bros. circus. Leah has been a few times, but this was Kate's first trip. We started the night on the floor looking at the animals and watching the clowns up close. Kate seemed interested for about 5 minutes and then wanted to run around. Leah really "got it" this year. She thought the jokes were funny and was amazed at the tricks.

We took our seats in time for the show to start. We were in a VERY crowded section and Kate and I sat next to another large lady and her 1 year old. So basically there were 4+ of us in 2 of the seats. It was slightly more crowded than a can of sardines. It was near impossible to move, since my "new friend" was sitting on half of my lap. Kate was on the other. While I tried to keep Kate folded like a pretzel to avoid kicking the man in front of us, I juggled her sippy and snacks. I didn't see much of the first half as I fixated on the completely empty section to my right. I let Daddy-O know that at intermission, Kate and I were out of there. There was no hope of getting any pictures for the first half.

At intermission I asked the usher if we could move to the abandoned section and her response was nothing short of heavenly, "Any where you want, sweetheart". AHHH, music to my ears. I drug Kate, all her stuff and my very asleep (from lack of circulation) leg over to a nice empty row. She could run, she could kick, she could do what ever she wanted. It was SO nice. All that to say, these are from the second half of the show. Towards the end Kate was exhausted and became quite delirious. I don't know where she got it from (hint: last photo).

Kate's favorite part was the circus delicacies such as pretzels, snow cones, popcorn and cotton candy. Leah's favorite part was the people dressed up as butterflies. Mine was watching the show through their eyes. A great time was had by all. Thanks for a wonderful time, Mammy and Pops!

14 Months Old

2009-07-27T00:33:00.009-05:00

Kate, during this month you:

- took your first bike ride and loved it

- learned to jump, getting 1 foot off the ground at a time

- have become Isaiah's second Mom

- know to put trash in the trash can and your dirty clothes in the hamper

- love to help clean up

- have perfected the cutest round face....ever

- know what to do when we ask you to hold our hand

- have developed an allergy to mosquito bites

- have continued being pretty sick this month

-still love being outdoors and swimming

- received your first trim at home

- still love to brush your hair and teeth

- use a fork and spoon on your own pretty well

- can drink out of a cup, but it is still pretty messy

- are absolutely crazy and have a wonderful sense of humor

- still refuse to say mama even though you can. Instead you point to me, say dada and then laugh like it's the funniest thing ever.

- will sit at the top of the stairs and click your tongue at me until I carry you down. You have started clicking to get my attention when you need help instead of using my name.

- know the names of most animals and can make sounds for elephant, puppy, tiger, kitty, snake, sheep, horse (giddy up) and cow

- can say Dada, La La (Leah), Eah (Leah), water, car, Mama, bottle, ride, trash, more and that

- you can mimic most words that we say

- jabber all day long in sentence form, throwing in an occasional real word

- have NO problem letting us know what you want

- try your hardest to do somersaults like Leah

- are constantly on the go, always running

- rarely cry when you fall, but will usually laugh about it instead

- love to ride on any and every thing, but become very upset when the ride is over. You scream and throw a fit while signing more.

- have more personality than some adults I know

- look more and more like you sister everyday

We love you!

Immunity

2009-07-26T23:06:00.003-05:00

Since my last medical update on Kate, a lot has changed. She wound up "well" for about a week, her only trouble a horrible diaper rash. Then on Saturday the fever and wheezing came back. It was no where as bad as the last time, however, since she had just had such a bad attack on her lungs, I decided to take her in Monday just to be safe. I also wanted to discuss the Flovent with Dr.H. Kate hated this medicine. It is an inhaler that we were using with a spacer and a mask. I am guessing that the Flovent tastes bad because she didn't have any trouble with the Xopeonex. With the Flovent she would hold her breath for a long time and wiggle out of my arms. I just didn't feel confident that she was getting a good, full dose ever.

On Monday, she had a thorough check up and was given the ever so common virus label. There was a little tightness and wheezing, but it wasn't bad at all. We were told to continue the Albuterol breathing treatments as needed. I asked about having the blood work done and Dr. H said that it had been long enough since her last round of steroids and antibiotics and to go ahead and get it done. I don't know everything that she ordered, but it took a solid 30 minutes for the nurse to input all the codes for lab orders. I do know they ordered a Humoral Immunity Panel with subclasses, 20 food allergies and 20 environmental allergies. Dr. H also switched Kate to Pulmicort twice a day via the nebulizer. It is a bit of a hassle to have to take the nebulizer if we are going anywhere and it takes 10-15 minutes for one dose, but I do believe she is getting a much fuller dose with this method.

We left the office at about 12:15 and despite my better judgement, went straight to the lab. There were at least 40 people in the waiting room and not an empty seat to be found. I waited at the check in window for 10 minutes hoping to schedule an appointment and when no had shown up, we decided to leave. We walked across the parking lot and got some lunch and then returned. There were only about 15 people still there so we decided to wait it out. We were called back about 30 minutes later and the poor phlebotomist just cringed when she found out it was for the baby. She tried one arm and Kate wiggled and she lost the vein. She got a good stick on the other arm, but lost it quickly too. She was able to dig around and find a vein finally without having to stick her again. We came home and all crashed for naps.

At lunch Thursday, I mentioned to Daddy-O that we hadn't heard anything and I wasn't sure I wanted to call and check on the results. I knew if I called, I would get the nurse who would tell me, "Yeah, they're all negative" or "Yeah, she's got ..." which would prompt me to ask, "Well, what does that mean?" and "What's next?". I knew I would most likely hang up and then call to schedule an appointment to discuss the results with the doctor. So instead of taking my "normal" route, I stayed busy deep cleaning the house. It needed to be done in a bad way and when I get worried or upset my OCD kicks in and can be my best friend.

It wasn't but an hour after our conversation that Dr. H called me with the results. All of the 40 allergies she tested for (everything from roaches to sesame seeds) came back negative. This isn't surprising as allergies typically show up later. However, her immune screen came back showing two deficiencies. There are 5 different antibody types: IGA, IGD, IGE, IGM and IGD. Kate has deficiencies of her IGA and IGG antibodies. I wasn't able to process all of the information I was given clearly and have many questions for the doctor next time we go in. From what I understand, the IGG can cause a child to catch every virus that "floats" through the air. They are very susceptible to infections. The IGA deficiency will cause a child's mucous membranes, especially the respiratory and digestive system, to be very susceptible to infections and viruses. So basically, she will be very susceptible to viruses and when she does catch one, it will most likely hit her "weak" spots. Kids with the deficiencies usually have a harder time kicking a bug or infection once they get it too.

This lines up with Kate's history pretty well. She seemed to be pretty healthy early on, but high levels of both IGA and IGG are passed through the placenta in high doses. These are two of the antibodies that are passed through the placenta and act as a newborn's immune system for a few months after birth. Then it is up to the baby's system to take over producing this. They are also both passed through breast milk. I can't imagine what she would be facing if she weren't such a good nurser. Kate started getting sick often in October of last year (enough time for the placenta benefit to wear off), but things got much worse after a really bad tummy bug on our Disney World trip. I feel like she hasn't been 100% well since. The rest of us didn't get hit nearly as hard as she did. One thing that has been puzzling all along (but "fits" in now) is that fact that she IS able to bounce back from these viruses. The fact that she goes 3-7 days between them means she IS able to get "over" them. There have been several things like this that seem to match up with this diagnosis.

One of the tests they did also checked to see what vaccines Kate's body made antibodies against. Fortunately, all of hers "took". I guess with deficiencies sometimes the body is not be able to accept the vaccine causing the child to have to be re-vaccinated.

While I do still have a lot of questions, I am so glad to know what is going on. I constantly flipped back and forth from thinking that maybe I was crazy to worrying that there was something "big" that we were missing. I felt like I needed to take her in for every little thing, in case it was the "missing clue" to what we were trying to find. While there is not a lot that we can do with this diagnosis, knowing helps. I am the type of person who doesn't weather well with the unknown. Give me knowledge, no matter how bad, and I can handle it, but the unknown, is pure torture for me.

From here our plan is to keep her on the Pulmicort by neb, twice daily to keep her lungs as healthy and protected as we can. This will hopefully prevent viruses from hitting her respiratory system quite so hard in the future and hopefully allow her to bounce back quicker when they do. We have also started her on a daily dose of Probiotics to help her overall gut health. She is also eating a LOT of yogurt these days. This too should help give her digestive system the best support for the down times. While her IGG deficiency should improve some with age and exposure, her IGA will not. We are supposed to use common sense with keeping good hand hygiene, staying away from sick people and will have to really watch our exposure come flu season. I am glad there are at least some small things we can do to improve the situation to help me feel less helpless.

At this point I'm also very torn with what to do about her nursing. I plan to talk to the doctor about this at her well check in a few weeks. She is deficient despite getting IGG and IGA directly from me through the breastmilk. I am not sure what's going to happen when she weans. At this point she will not drink cow's milk. She only drinks water and breastmilk. Despite this, I was almost at the point of weaning early last week, but don't think it's in her best interest now, especially with back to school bugs and flu season approaching. I never thought I would nurse a child past 1 year. At a year I thought not past 18 months. She still enjoys nursing and I do enjoy the bond it brings, but am ready for a little more freedom! I guess we will just wait and see what the good doc says.

Getting Busy

2009-07-26T22:47:00.004-05:00

Got your attention, huh?

The past few weeks have been getting busy. There have been many changes and a lot to get done. About a month ago, Daddy-O began working part-time at Starbucks so that we could get on some decent benefits. He often has to be at work at 4:00 am, so our whole routine has changed to help make this easier on him. I have vowed to take some of his "duties" off his plate and have made myself get up earlier to get more accomplished. While this has been a big change for all of us, I think we are starting to settle in. The job has been great. It gives Daddy-O some social time, a few hours away from the computer, he will be eligible for full benefits (medical, vision, stock, vacation, etc.) with only part-time hours and it is the least invasive job when it comes to affecting the girls. Often he is home from work before they wake for the day. I hope that he doesn't over do it though. I can't explain how grateful I am that God blessed me with a man that would do ANYTHING for his family. Even taking on an extra job, just for the benefits. We are blessed.

On top of this, there have been changes in my work schedule, longer gymnastics classes, a fence and a shed to build, lots of doctor's appointments, playgroups and many trips to the pool. This past week we were able to go see Cirque du Soleil's show, Saltimbanco, as well as the Ringling Bros. Circus. The girls had a blast at both. We've also been looking at preschools for this fall. Things have been CRAZY. Whoever said summers were for relaxing, must have been childless.

One Year Portraits

2009-07-21T02:58:00.009-05:00

Back in May, we had Kate's 1 year portraits done. She was less than cooperative, even after mommy left the studio. Our scanner is doing a horrible job these days, so please excuse the funky color and lines.

Gymnastics Day

2009-07-16T14:50:00.013-05:00

Since I am so far behind on here, I thought I would catch up what I can, when I can.

On May 9th, Leah had a skill day at gymnastics. She loves her gymnastics class and I am so proud at how well she is doing. She has no fear and is doing very well considering she hadn't met anyone prior to the first class. The other day she told Kate, "I'm sorry you don't like waiting on me, but you have to if I'm going to be in the Olympics". I have no doubt that if she wanted to be, she will.

Push ups

Somersault on the balance beam

Walking the high balance beam

She loves this!

Flips on the uneven bars

Monkey climb

Great job!!!

Taking the podium

One last tumble

Her first gold medal

Our little star!

As soon as she took these off, Kate started putting them on. Do we have big sister envy or what! Unfortunately Kate looked more like a Russian wrestler.

13 Months

2009-07-16T13:21:00.015-05:00

We have learned a lot about you this month, Kate Kate. This month you:

- Weigh just shy of 22 pounds

- Are about 29 1/4 inches tall

- Wear a size 4 diaper, size 3 shoe and size 12 month clothes

- Loved Chuck E. Cheese's, just not Chuck E. Cheese

- Sill have a very healthy appetite

- Want your sandwich or burger with everything on it, not dry like mommy tried giving to you

- Have developed a love for root beer floats

- Are still teething although your first molar is through

- Love spending time with your daddy more and more

- Are obsessed with brushing your teeth and will go to your drawer, retrieve your toothbrush and walk through the house brushing many times a day

- Discovered ketchup and love to dip your food in any dip you can find including salsa
- Take one nap in the afternoon and sleep about 12 hours at night, usually 9-9

- Have, unfortunately, quit napping during church

- Absolutely love going for rides in your new car
- Are able to point out items in a book when we call their name
- Pretend to eat the food pictures in books

- Want to be just like your big sister
- Have been sick most of this month
- Haven't been to bible class or the nursery in months because of your health
- Don't play very well with others because of this

- LOVE the water and playing in the fountains. You don't even mind when it hits you in the face.
- Have started answering, "Um, burger" anytime we ask you a question. I am still not sure where you got this, but it is so stinkin' cute.
- Know that your shoes and socks go on your feet and attempt to put them on

- Enjoy picnics and being outside
- Can go down the stairs by yourself, on your tummy

- Love to run, dance and spin in circles
- Can make animal sounds for elephant, tiger, snake, sheep, horse (giddy up) and cow

- Are still very pigeon toed, but are done with therapy
- Try to jump and get one foot off the ground at a time

- Love to dress up
-Will do anything for a laugh

- Are still a big mommy's girl and panic if I'm not in sight
- Are still breastfeeding at least three times a day
- Do not care for any juices or cow milk, only water

- Are making new friends and starting to enjoy play dates
- Are a very sweet, happy girl who has more personality than we know what to do with

We love you Kate Kate!!!

All Clear

2009-07-10T17:05:00.003-05:00

Let's see. We did breathing treatments Friday, Saturday and Sunday, every three hours, except for at night. We decided I she needed the sleep. She seemed to be getting better and was off the steroid by Saturday. Although she sounded a little rough when we skipped an occasional dose and first thing in the morning, we could tell she was finally improving. We went in and saw Dr. F (on-call) on Monday for a follow up. I thought Kate sounded great. Her O2 sats were at 100%. The doctor came in and still heard some rattling and wheezing. She said to continue with the breathing treatments every 3 hours during the day, skipping the night, as long as she got at least 4 a day. Wednesday she started running a low grade fever, 99-100.6 range. I took her in today to see our pedi that is back in town and make sure we weren't brewing a bug for the weekend. Her lungs were.......CLEAR!!!! She wasn't fully exhaling, but the doc was comfortable moving her treatments to an "as needed" basis to see what will happen. YAY!!! She also took her last dose of Supprax today. The doc said the fever is just her "typical" virus.

We are starting her on a daily regimen of Flovent. It is an inhaled, daily steroid to help protect and heal her lungs so that viruses don't just head straight for them. It should help her get over them faster too. There aren't many side effects or dangers, as it doesn't enter the bloodstream. The doc felt it would be much more damaging to let her keep getting sick like this, possibly causing more inflammation and even scarring. She gave us the option of holding off until school starts and the viruses really pick up, but since that is only a few weeks away and she hasn't been well a solid week since before March, we opted to start now. Praying it helps! She also is ordering some pretty intense immune screening. The only catch is she has to wait two more weeks so that the steroids won't throw the tests and she is supposed to be "well". We will wait the two weeks and see, but we may have to settle for "having a little virus". We will see. We go back in three weeks for her 15 month well check. Let's hope we can stay out of there until then!

What a Week

2009-07-03T22:13:00.009-05:00

I realize that this blog has become a boring medical journal, but unfortunately for now, it is our life. I have debated on leaving this all off, but this is a journal of us and this is what we are going through for now. I do have some fun posts in store though.

That being said, this will be a LONG post. Sorry!

This has been a rough week. Starting Monday, Kate needed around the clock breathing treatments after an asthma diagnosis. When I found that out, I sent Leah off for a few days, knowing that I would need to sleep when Kate did during the days and nights and would be unable to do so if she were here. Monday went okay. I couldn't tell that the breathing treatments were making any difference, but knew it could take time. Monday night I stayed up until midnight for a treatment and then headed to bed. She stayed pretty calm for it and laid right back down. I got a little too excited at how "easy this was going to be" and as soon as my head hit the pillow, she was up.

I had to be quiet and careful because Daddy-O is working an early morning shift (4 am) and I didn't want him waking up from all the noise. From midnight until about 3:45, she wiggled and moaned and cried. I tried rocking her. I tried nursing her. I tried letting her cry it out. Finally, I gave in. I couldn't put her in bed with me because Daddy-O was sleeping in there. I got the bright idea, in a half asleep stupor, to go in to Leah's bed. She has a full sized bed so there would be room for us both. This worked well because I could try and sleep while she wiggled around and it kept her from crying. Tuesday was more of the same. Breathing treatments, steroids, naps, lots of holding her, many books. Also, she had been running fevers on and off all day.

By Tuesday afternoon she was still retracting and I couldn't tell that things were getting any better for her. I called to ask the doctor to call in an antibiotic and she was gone for the day. I asked if the on-call (for the on-call) doctor could call it in and they said that they needed to see her again since her breathing wasn't any better. I went ahead and scheduled an appointment, but as soon as I got off the phone it all caught up to me. I was tired, I was upset, I was tired of it all. Seeing as we had spent $275 the day before, I was certain it would be as bad. That coupled with the fact that our insurance would be effective in less than 12 hours, led me to cancel the appointment. I decided if it was an infection, it would still be there tomorrow and if it got bad enough, I would just take her to the ER. I set an appointment for first thing Wednesday morning, when our insurance would be in full swing.

Tuesday night, Kate did better about sleeping between treatments. The side effects from the steroid and treatments had definitely made themselves known by Tuesday and she had the shakes and more energy than I have ever seen. I am sure she slept out of sheer exhaustion. Wednesday morning we got up early and headed out for the dreaded 8:30 appointment. I have learned that the office is peaceful at this hour and we seem to get out much sooner than the later appointments. As much as I hate mornings, I hate being stuck at the doctors office all day long even more.

The appointment started with checking her pulse ox. It was measuring 99-100%. I started thinking that maybe I had over reacted and didn't need to be there. The doctor came in and gave one listen to her lungs. She said she sounded "junky" all over and she couldn't really hear very well. She ordered blood work (CBC) and breathing treatments. One was a double dose of the double strength Xopeonex and the other was Atrovent. She was esentially getting 3 treatments all at once. She fell asleep during them, partly because she was tired and partly because she was upset from the blood draw. The doctor came back in and checked her again and still she was too junky to hear anything. She ordered two more doses of Xopeonex. When those were done they checked her pulse ox again. It was 94-96%. The doctor said that the medicines had opened up parts of her lungs she hadn't been using. Still seems strange to me. I would expect it to improve or stay the same since it was so good already.

When she listened again, she still didn't hear much improvement so after 2 and 1/2 hours, we were sent to the hospital for a chest x-ray. She did go ahead and put her on an antibiotic, Suprax, because she felt the fever had been present too long. She said we needed to continue the steroid and breathing treatments every 3 hours around the clock and follow up on Monday. She also let me know that she would be on call all weekend so at least I wouldn't have to explain the whole situation to someone else if we needed to call. That was good to know!!!

The chest x-ray didn't go quite as smoothly as last time. While we waited for our turn, Kate ran laps up and down the hallway, entertaining all of the patients waiting for their turns. She is SO wound up from all the meds and lack of sleep. The finally called us in and the tech was lacking in the personality department. She had Kate sit on the table with her back against the film. Kate started screaming immediately. She snapped at me to hold her arms and when I did, Kate went stiff, standing up, knocking the film to the floor. Eventually they brought another tech in and the two of us were able to hold her. We grabbed a quick lunch, filled her antibiotic and went to pick up Leah. Kate had been missing her sissy really badly. She was glad to have her home. At this point I received word that my Dad and my sister, Christa, were trying to get out of Honduras, a week early, because of the political situation there and how tense things were getting. Ah, a little more stress!

Wednesday afternoon, Leah went out to play with the neighbors and next thing you know, they were bringing us dinner. We are truly blessed with one set of great neighbors. I went to check the mail and there was an encouraging card from a family at church that I haven't even taken the time to get to know very. Included in the card was a check "to help" with some of our stress. It will payoff our balance at the doctors office, exactly, like to the penny. Coincidence or blessing? You tell me. Later that night another friend told us they would be bringing dinner Thursday night. I can not express how truly blessed we are. We have great friends, family and brothers and sisters in Christ. We don't deserve any of it and yet God continues to provide and bless us in ways we can't imagine.

Wednesday night I went to give Kate her treatment before bed and she fell apart. Up until now, I felt like we had mastered the breathing treatments. I learned that the holes in the mask are for twizzlers, teddy grahams, cheerios and raisins. Not for ventilation like one would assume. You can also put a straw through them for yogurt drinks or other beverages. Tonight I tried all of the tricks. Still she went stiff as a board, screaming and holding her breath. I fought with her for a good 15 or 20 minutes and she was hysterical. She couldn't catch her breath and I had almost decided we were going to have to go to the ER. She wasn't breathing right and wouldn't let me give her the medicine to help it. I decided to take a break and get her jammies on, before trying again. When I changed her diaper, I noticed the problem. She was getting a diaper rash. I had to clean her up and get some cream on it, but it was awful. I have NEVER heard her cry like that. Once I got a clean one on, she cried and thrashed around for another 30 minutes. She was so upset she was vomiting, but was able to keep it all in. I felt SO bad for her. I finally was able to get her the meds, get her nursed and get her to bed.

Thursday we had a quiet morning at home. I felt like I needed to get out of the house and called up a friend for lunch. I got the girls bathed, Kate medicated, nursed, down for a nap and then headed out. It was SO nice to get out, even just for an hour. When I got back it was time for another round of meds and then Leah's gymnastic class. At the hour and a half long class, Kate was nothing short of a holy terror. She screamed, cried, threw herself down and took off running, every chance she got. I'm sure people thought I have NO control over my kids. This week, I'd have to agree.

I feel so bad that her body is going through so much. Her heart is racing constantly. She shakes all of the time. At dinner the other night she couldn't keep food on her fork long enough to get it to her mouth because of the shakes. I know that she doesn't understand any of it and that makes it even harder. Everything she does is in fast forward. She's running into stuff constantly, which is very abnormal, but she just can't slow down.

After gymnastics, I took the girls to the pool to try and wear Kate out some. I figured at this point it couldn't hurt. On the way there, Leah complained about being hot, but she had just finished a hard workout. We got changed and hopped in the baby pool. Kate has no problem traversing the baby pool water, walking around, jumping, splashing, but since she is on the equivalent of speed, she couldn't stay standing for more than a few seconds. We decided to try the big pool and within minutes, Leah said she was burning up and that her head hurt bad. I asked if she wanted to leave and she didn't. I figured if it was from overheating the pool should actually help. Within another 5 minutes, she mentioned that her tummy hurt. That was my sign to go and we headed out right then. I gave her a bucket in the van, just in case. She was having trouble keeping her eyes open and just kept saying her head hurt really bad. We weren't out of the parking lot before she was out.

I called home and had Daddy-O get her some dry clothes and tylenol ready. She was pretty lethargic until Kate got ahold of the thermometer and "tried to stick it in her bottom". I guess Kate figures if she's gotta go through it, Leah's not getting off easy with an armpit check. She perked up a little and watched a movie, while sipping some sprite. She went on to bed with no other troubles. Kate sounded better at bedtime than she had since Saturday. While her cough sounds worse, it is looser and more productive. She is also not wheezing for about an hour after treatments. This is the first break from wheezing since this started. We decided that unless she woke up, we would let her sleep all night without treatments. At some point you figure they aren't going to get well without good rest and it becomes a toss up as to which they need more, meds or rest. Leah was up at 3:30 to potty and Kate was up from 3:30 until 5:30 for no good reason at all.

Since Leah had no trouble during the night, I chalked it up to overheating and dehydration. She wasn't too interested in eating, but she is a cautious type of kid. She had some Jell-o and crackers. She also took a three hour nap, but I know that she didn't get to bed on time or naps for most of the week. She woke up just in time to go to dinner with our friend, Chris. His wife and kiddo are out of town and we had planned to eat dinner and hang out. By the time we got in the car it was obvious she was fevered again. At dinner she didn't eat much and complained her tummy hurt some. She also has several cold sores that hurt when she eats. Since she was in and out of the bathroom several times, I would guess she's got a tummy virus. Probably the same one that gave Kate diaper rash. Luckily, I think we skipped right over the worst part of it.

After dinner, I needed to run put some things in Lisa's car and pick up some more saltines, as well as some bananas and powerade. The girls were in the van so I headed out with them while Chris and Daddy-O stayed home. We went to find Lisa's car in a parking lot near the pavilion. There was a patriotic concert tonight that is very well attended. Just as we turned towards the traffic, Leah informs me she needs to potty. From the look on her face she meant it. Only problem is there was no where to go. There was traffic everywhere and every establishment near by was packed. I pulled into a drive for a park that was completely blocked off. I'm not even sure I was totally out of the street. I knew there was a public bathroom there. We ran in and got her situated. This park has a huge greenbelt with a busy street on one end and the waterway on the other. Just as I went to wipe Leah, hyped up steroid girl must have done the limbo under the bathroom stall and disappeared. There are two exits from the bathroom and thank God I picked the right one. I caught her heading to the street just as a crowd was walking by. Again, I am sure I looked like a stellar parent. We went to the car, which thankfully hadn't been towed, and I could tell Kate was stinky. I knew I needed to get out of this "parking spot" and proceed on to find Lisa's car.

We found it relatively fast, considering the whole town was in this area tonight. We then headed to the grocery store. When we got there I pulled out the diaper bag to change Kate. Since she's had a rash, I felt bad for leaving her in it as long as I had. Despite the fact we were only getting a few things, I felt it was best to change her in the car. The diaper bag was empty. No diapers, one wipe. I checked the stow and go bins and found a diaper and wipes. See, I am prepared, sometimes. We freshened her up and headed in. Grabbed some powerade, bananas, ice cream, yogurt drinks (to hide Kate's acidophilus in), goldfish, saltines and popsicles. Pretty much anything Leah "promised" she would eat. We are at the check out in record time. I go to pay and don't have my debit card. I take out my card to a secondary account and swipe it. It says it's expired. Sure enough, 02/09. I thumb through for cash. I've got $15 and the bill is $30. I see my business card and think, "I'll have to use it and transfer money when I get home. At least I have this!". It's not activated. Call the 800 number to activate. They want the last four digits of the account number, which I don't carry on me.

At this point Leah is "starving" and Kate is back in holy terror mode and crying because she's tired. The girls are fighting over who can touch the bag and I'm trying to decide whether to run or cry or both. I try to figure out what to put back so that I can pay with the $15 dollars cash I have, but every time I pick something up Leah cries that this is what she really wants to eat. And she hasn't eaten all day. And she's sick. And hungry. And spoiled. I call Daddy-O and ask him to come bail us out. Funny thing is, since he drove to the restaurant and I took the car from him, you guessed it, I have his keys. And mine. Thank GOD Chris was there and didn't mind running him over. I thought about telling them to just meet me at the liquor store next door, where I would be starting my own tab, but didn't think that would be good with the kids and all. We proceeded to pay for our melted popsicles and came home.

When I called my mom to tell her not to panic if it showed someone trying to use the business account (remember it's been drained by theft before?), she asked if I was calling because I needed to be bailed out of jail. My response was, "if I was in jail, I wouldn't be calling ANYone. At least not before Monday.".

It has been such a long week. I am so tired I can hardly think. I've called my girls by the wrong name at least a hundred times. My house is in shambles and the laundry mountain grows constantly. But we are blessed. Blessed with each other. Blessed with a wonderful, safe, clean (kind of) home. Blessed with family. Blessed with friends. Blessed with insurance, once again. Blessed with the kindness of others. Blessed with our health when it all comes down to it. Blessed with the knowledge that God loves us. Blessed with freedom. Blessed with servicemen and women that put it all on the line for our freedom. We are TRULY blessed. I hope that this Independence Day you discover how much you are blessed.

Big Surprises

2009-06-29T23:00:00.004-05:00

Last Friday, June 19th, I took Kate to the pedi. Big surprise, I know. She had been running a fever and was off her A game. She had been rubbing her ears a lot and I figured we had better get them checked before the weekend. Her only other symptom was that she sounded like her throat was tight. Not really hoarse, more raspy. Her ears checked out fine, but they did lab work just to check. Our doc really doesn't like leaving things unresolved before a weekend and I appreciate that. Her results came back showing she was fighting off a virus, with low white blood counts. Big surprise, I know. Since then she seemed to perk up.

This Friday she had a runny nose. Isaiah had one on Wednesday when he was here so this was not a big surprise. At least it was a clear, runny nose this time. By late Friday, she was running a low grade fever and was sounding hoarse and wheezy. By Saturday she was full blown wheezing and had a fever of 101+. We started breathing treatments, as needed. Sunday morning she and I stayed home from church. She had a couple of diarrhea diapers and slept a lot. By Sunday afternoon she sounded horrible. I had my sister in law, Lisa, check her lungs and she confirmed that she had some crackling going on. She was also having a lot of retracting. I knew I would have to take her to the pedi on Monday at this point, but her new insurance doesn't go into effect until Wednesday, no surprise.

I had a horrible time sleeping last night, as I worried about how bad she sounded. If we had insurance, I would have been very tempted to have taken her in. This morning I was up at 7:45 to call the office. They confirmed that she need to be seen and asked me to bring her in right then. I woke Kate up and we headed out. She did have some green discharge from her nose this morning. They did a pulse-ox on her when we got there and I was very surprised it was between 97 and 99. She was still straining and retracting quite a bit. The on-call doctor (ours is on vacation, big surprise) came in and checked over her. Her ears were fine, no surprise. Her nose needed to be suctioned and cleaned with saline, no big surprise. Her chest was really junky and the doc had a hard time hearing at all. She ordered a double breathing treatment and a dose of steroids and then wanted to check her again.

We suctioned her nose, rinsed it with saline, gave her the steroid, gave her the breathing treatments and waited. A while later they checked her pulse-ox again and it was down between 94 and 97. At this point she wasn't retracting. Apparently when she was retracting (using her auxiliary muscles, in this case stomach, to help her breath) she was getting enough oxygen. When her airways opened a little more she quit using these muscles and wasn't getting as much oxygen. That was surprising to me. It makes sense now, but I didn't expect for a) her original pulse-ox to be so high and b) for it to drop with a treatment. The problem with her retracting and using auxiliary muscles to breath is this. That is a last line defense. That is what the body does to get oxygen when it isn't getting enough. When those muscles get tired, which they will, they give out and she will be in real trouble.

The doctor checked her again and officially diagnosed her with asthma. Despite the green in her nose, she didn't really feel like there was an infection brewing and asked us to withhold the Motrin to see if a fever spiked. As of tonight she was running 101.4, so we will be calling in the morning for an anti-biotic. The doctor didn't want to jump the gun on that since Kate had already been having diarrhea and an anti-biotic is sure to make that worse. Two hundred dollars later (that's $200, for one visit, no surprise), we were given an oral steroid (at $30) for 5 days and told to do breathing treatments every 3 hours, day and night. She said we might be able to keep her out of the hospital this way. While I really don't want to be up every 3 hours, I really don't want to wind up in the hospital. With no insurance. No surprise. At this point we are allowed to stay home even if she continues retracting until she is showing signs of fatigue or wearing down too easily. As long as she is still playing and has some energy we are okay.

Daddy-O started a part-time job last week to try to pick up health care benefits. So he's having to be at work at 4:00. IN THE MORNING. I am NOT a morning person, no surprise, but have been getting up earlier since he started working. I don't feel right about sleeping in when he gets home from one job and starts on the next. I figure the least I can do is pick up some slack. Because of his crazy early shift, I don't feel right about asking him to take the night shift with the breathing treatments. So it's just me and Kate-Kate.

If Kate is not significantly better by tomorrow (as of bedtime she was not), we will be returning to empty our piggy banks once again. If she is doing better, then we will be returning on Thursday for a follow up before the long weekend.

This new diagnosis brings on lots of new questions, no surprise. Mainly the old chicken <--> egg situation. Is the asthma causing her body to be more susceptible to viruses? OR Are the viruses causing her asthma to flare up? I'm pretty sure the second is true, but am not 100% sure about the first. I would guess that since she will have insurance and her doctor will be back in town next week, we will probably go in and make a new game plan. We will be looking into more testing or seeing some specialists. For now, I hate that she has gotten this diagnosis. As an asthma sufferer myself, I shouldn't, but do fear this disease. It can get so out of control so fast. I know for me, even as an adult, it is hard to "listen" to my body for symptoms. Having a child that cannot vocalize any symptoms worries me. At the same time, if this diagnosis brings us a step closer to an answer, I will welcome it. For now, we do what we can until we know more.

I had high hopes of getting her 13 month post done, but unfortunately my 3 hours is up, no surprise.

1 Year Old

2009-06-03T14:42:00.023-05:00

My dear Kate-Kate, You are growing up so fast. There is not much "baby" about you any more.

This month you:
- Weigh 21 pounds, 7 ounces (50-75th %)

-Are 29 1/4 inches long (50-75th %)

- Have a head circumference of 18 inches (50-75th %)

- Are "perfectly" proportioned (even with your tiny feet and big thighs)

- Received one of Daddy-O's favorite hand-me-downs

- Wear size 4 diapers

-Wear mostly 12 month clothes and size 3 shoes

-Got to watch the Jayhawks play

-Have one of the best senses of humor (you think it is hilarious to pop

mommy's bra strap while you nurse)

- Will constantly repeat anything that gets a laugh

-Took a trip to the children's museum

- Got your 7th and 8th teeth (2nd bottom teeth on each side)(3/27)

- LOVE to read books

- Sleep from 9:00 pm to 9:00 am most nights
- Still turn your feet in and curl them under you

(which is why we are still having to do therapy), but it is terribly cute

- Take one 2-3 hour nap after lunch (even while we are out sometimes)
- Can stand up without pulling up on anything (3/24)

- Took 20 + steps at a time by 3/25

- Walked all the time by 4/15

- Refuse to crawl now that you can walk
- Have been very sick this month, all month

- Had your first round of X-rays

- Have been a tad on the cranky side

- Are very good at sharing with us how you feel

- Get very upset when you run out of food

- Have the cutest upset looks and pouts

- Cover your eyes with your hands and sob when we tell you no

- Enjoy rocking in rocking chairs

- Think that anything with a loop is a necklace,

including power cords and bra straps, and wear them as such

- Like to fly in the air and "stiffen up" your entire trunk to balance in the air

- Could spend all day, every day outdoors

- Now know how to smell using your nose instead of your mouth
- Know where your eyes, ears, hair, mouth, nose, feet, fingers and belly button are

- Have played at the fountains and love it

- Rub or twirl your hair when you are bored, tired or trying to soothe yourself.

This doesn't go so well after eating.
- Eat all table foods and have even had peanut butter and jelly

- Eat three meals a day at the table

- Nurse 3 to 5 times a day

- Have definite food likes and dislikes

- Like corn, raisins, ice cream, cheese, ham, pizza, fish, mac and cheese

- Dislike broccoli, hot dogs

- Can use a fork or spoon if we fill it for you

- Can drink out of a cup, can, straw or a faucet

- Met the Easter Bunny and didn't care much for him

- Caught on to Easter Egg hunts once you saw what was in them

- Celebrated your first Easter despite being really sick

- Still love to swing

- Are very cuddly when you want to be

- Are seriously attached at Mommy's hip

- Love your bath time or anything having to do with water

- Poop in the bath tub more than any child I know

- Will not go potty on the toilet

- Are the sweetest, funniest, most lovable 1 year old that I know!

- Are definitely your sissy's best friend!

UP

2009-06-03T13:40:00.002-05:00

No, this is not a movie review. I have, however, heard that Pixar's new movie "Up" is fantastic, just haven't had the time to see it.

Things here are looking UP a little. Daddy-O has a real good lead on a second, part-time job. The girls finally got accepted to the insurance plan (after taking a pay cut) that we had hoped they could get on. Kate's health isn't necessarily better, but isn't much worse. I feel like I'm "handling" my stress load a little better this week.

Last weekend we skipped church and went to brunch and the movies. We saw Night at the Museum 2, which Leah loved and Daddy-O fell asleep in, while Kate and I roamed the halls. She has an issue sitting still....and being quiet....

Other than that it's been business as usual. Work, work and more work. Last week Leah finished up this session of gymnastics and starts back next week in a new, more intense class. Mom and I have taken advantage of the late school dismissal and have been selling our rag letter shirts to all the area schools. We have a lot of schools wanting them for their official school shirts next year so we will be BUSY in August and September. We've been keeping Isaiah a lot too, since Micah has been travelling. It is so fun to watch the "cousin bond" form. He's a fun kiddo to have around.

In the health department, Kate started antibiotics again on 5/11 for sinus, ear, pink eye (for the umpteenth time) and we had Leah go in and get check out too. She had been having a bit of junk and my thought was if we could get them both on antibiotics at the SAME time, maybe they wouldn't keep passing this stuff back and forth. We saw an on-call doctor who said Leah looked fine and her ears had lots of wax. She said the part of the ear drum she COULD see looked like it had fluid, but was fine. Here is where our wonderful doctor would have ALWAYS cleaned out said wax to be sure (plus the wax needs to come out). So we went on our way, $75 lighter. By Thursday we were having to yell at Leah for her to hear us. We tried Q-tips and ear wax removal drops, but nothing would work. Friday morning we got an appointment with our doc and headed back in. She didn't see any wax and said she couldn't hear because there was a ton of puss in her eardrums. Poor baby. I felt so bad. If the doctor had gotten a good look, Leah wouldn't have felt so bad all week (and we would have saved some mullah). So she started a round of antibiotics. The doctor also put her on the eye drops, just to be safe.

Kate and Leah both got off their medicines around the 22nd. Kate did real well on this antibiotic, Bactrim. She didn't have any diarrhea, only had fever once, had one "viral rash", but that was it. It seemed to really work on this bug. We had the healthiest 5 days in the past several months. By the 26th she had a horrible rattle in her chest and more green eye and nasal drainage. We got back into the doctor on the 28th (who saw us for no charge...I thank God for this lady!!!) and started the same antibiotic up again, this time with breathing treatments in place of the eye drops. She had viral bronchitis with wheezing, sinus and eye infections. She is still on the antibiotics and an occasional breathing/inhaler treatment. She is doing significantly better being that all her drainage is now clear. She does still have a cough, runny nose and some wheezing. She is also cutting 3 more molars and was up almost all night last night. AND here I thought being an adult was tough!

I know that Bactrim is an antibiotic you can be on long term to prevent infections. I'm wondering if they are planning to keep her on it long term or if that is an option since it seems to be working. Who knows!

Anyway, thanks for all the prayers on our behalf. They have, most definitely, been felt.

Birthday Party

2009-05-23T14:39:00.019-05:00

On April 25th, we celebrated Kate's first year of life. We started out the morning with presents in bed, as a certain big sister couldn't wait "any longer".

Kate received a doctor's kit from her sissy and some books and a new car from mom and dad.

We got up and around and headed out to Nana and G-Daddy's to get ready for her party. Around 3 pm guests began arriving. We started with opening presents.

Birthday Girl!

And then we had cupcakes and ice cream. YUM!

Although Kate did enjoy the cake, she didn't eat nearly as much as the night before with her smash cake . I think the tummy ache she had most of the night helped remind her not to over do it.

After that we had planned to swim. There was quite a bit of cloud cover so the pool was not very warm. Since Nana and G-Daddy have a heat pump we were able to fill the little pools with very warm water for the babies. It was like a baby hot tub.

Cousin Abbie

Cousin Isaiah

The little swimmers

After we had everyone dried off we tried for a group shot. Unfortunately, Grace had already left. Trying to get the four kiddos to sit and look at the camera was quite entertaining.

Ready...Set...

BREAK!!!

It's Kate's party and she'll cry if she wants to...

We're outta here!

Overall it was a nice, stress free party. We are so blessed to have such wonderful friends. Thank you Nana, G-Daddy, Christa, Andrew, Caleb, Michelle, Sarah, JT, Brandon, Erin, Micah, Lisa, Isaiah, Julie, Annine, Abbie, Amy, Jake, Grace, Christi and Preston for helping us celebrate our special day!

Still Stinks

2009-05-13T16:11:00.004-05:00

One day I will post about Mother's Day and Kate's birthday and other exciting stuff.

Starting last Saturday and running through this Sunday (that's a whopping 9 days), Kate had diarrhea, as well as her pink eye, sinus and ear infection. I am not talking about a little loose diaper here and there. I am talking up to the arm pits, five or six outfits, three sets of sheets, every.single.day. I figured it was from the antibiotic she was on and started her on probiotics. When that didn't work we tried another form from the health food store called Jaro-Baby. That didn't work either. By Monday, Leah had trouble with it too. I finally had to put her back in pull-ups because the laundry and clean up were getting out of hand. By Thursday Leah was back to normal and finally by Sunday, Kate was semi-solid again. Sunday afternoon her pinkeye was back and her nose was dripping green goop again. So here we are on yet another round of antibiotics (this time the doctor called them in since we have no insurance). We are just praying this one doesn't "clean" her totally out.

At this point I think I am passed being stressed with life. I think I am at the point that I am depressed. I have trouble handling my kids (who are in a MAJOR push buttons/act out stage), I have trouble handling my responsibilities (found a stack of unpaid bills), we're running out of money and I am just in an all around funk. I am having trouble seeing the good in the world, this country, my life. My feelings of ungratefulness lead to more feeling bad. I am sure this is just temporary, but I wish it would pass quickly. If you get a chance, please pray for me and my sanity (whatever was there) to be restored. Thanks!

Recount

2009-05-02T12:02:00.001-05:00

Well, Leah woke up with a full blown sinus infection and pink eye this morning, so you can add that to this weeks count. We are headed out to the cabin for the night for some hopeful R&R and time with Mammy and Pops.

All in a Week

2009-05-01T23:13:00.004-05:00

I should have put up posts from Kate's first birthday this week, but no such luck. Add that to the ever growing list of things to be done around here, namely finding insurance and mopping my floors. Oh, and sleep. That would be good.

Saturday was Kate's party. She had some sniffles, but was otherwise fine. When we got home from the party, we received some mail informing us that the health insurance we had spent the last 2 months applying for was denied. Her current coverage ends on Thursday. Sunday we went to church and then stopped for a quick lunch. At lunch we noticed the dreaded, green goop in her eyes. By the time nap was over, it was obvious she had a sinus infection and pink eye. Leah also had a pink spot on her eye lid from last week, but it was just a stye. We headed to the doctor Monday morning and found out Kate had a sinus infection, pink eye and an ear infection. We got our prescriptions and headed out, almost 3 hours later. I did double check with the doctor to see if there were any other tests she wanted run before her insurance ran out. Her immune panel came back totally normal, so she didn't see the need for further testing.

Tuesday we went to work, where Kate slept most of the day. I called and tried to sort through some insurance stuff. During one phone call, I had been transferred no less than 4 times and had just finished relaying my story to the agent on the other end. Just as she began explaining things to me, Kate dropped the remote off of my parents bed, hitting the phone base that I had put "out of reach" on the ground and disconnecting my call. THIS IS HOW THE WHOLE WEEK HAS BEEN. By Tuesday night I was so stressed out and tired of it all, I called Daddy-O and told him we were taking the girls to Chuck E. Cheese for dinner. We needed some "family therapy" time. We wound up being the only ones there for most of the time and had a GREAT time. All of the "house arrest" and doctor's office visits have really caused Leah to start acting out. I think she is tired of getting little attention and no outlet. It is SO hard to balance trying to keep Kate healthy and Leah entertained. I need to do better at this!

Wednesday we went back to the doctor for Kate's 1 year old "well" check. The doctor was impressed with how well Kate's infections were all clearing up and she was able to get all four of her shots. By the time we left the office, almost 3 hours later, Kate passed out and stayed asleep when we got home. Unfortunately she woke up very cranky. At first I thought she was just hungry, since she had slept through lunch. She was cranky and cried most of the evening. I finally put her in the bath, thinking the warm water would help her legs. She did okay until she looked down at her bandaids and then she would cover her eyes and sob. It was pretty pathetic. At some point during the day I also noticed that Leah had another yeast infection (she is really prone to these). Kate had a hard time nursing, didn't want to be held and would go from being okay to crying in 0.3 seconds. By 10 o'clock she was acting flat out drunk. It was then that I remembered she had a weird reaction to her shots once before. From 10 until midnight, she entertained (daddy laughed, mommy was a little nervous) us with her drunken stupor. She finally fell asleep at midnight and slept the rest of the night.

Thursday the girls and I went to look at sewing patterns with Mammy. We also went to lunch and had a good visit. Leah was thrilled to get out and Kate was still very fussy. She went down for a late nap and woke up still cranky. It is weird. She has ALWAYS been such a tough, happy baby. She is definitely not herself. She didn't even play well with Isaiah yesterday and wound up scaring him with her temper several times. She has been biting toys and books during fits. I am not sure if it is the Augmentin she is on or if it is all from the shots or if we are starting a new "virus" and she just feels lousy. Either way, I hope it passes soon and that this is NOT the new norm. Thursday night during dinner, Leah cratered and had an earache, cough and stuffy nose. Luckily it is still being held at bay with over-the-counter meds.

Today I planned to spend with my sister, Tiffany, who is bored and on bed rest. We were headed out the door to pick her up when my mom called. My dad left for Honduras yesterday morning. My brother Andrew had a really bad seizure last night and wound up at the hospital. She and Andrew didn't get into a room until 3 am. She came home this morning, leaving Andrew to fend for himself, so that she could embroider some shirts that had to be done today, only to find her keys locked in the shop from last night during all of the commotion. She found my dad's keys, which didn't work for some reason. The girls and I (Kate fussing the whole way) swung by and picked up Tiffany and headed out to the shop. We picked up lunch on the way and stayed until the shirts were done (after SEVERAL issues with the machine, etc.). THIS IS HOW HER WHOLE WEEK HAS BEEN. I then came home, fixed dinner and almost crashed.

Kate was fussing and screaming and wanted to be held and then not and was thirsty and fussy and....... Leah wanted attention. Just attention. That's all. Well, and to be held. My phone was ringing off the hook. And all I wanted was to crawl under the covers (not the first time this week). I finally decided that my thoughts were not good thoughts and I needed to put Kate to bed. Daddy-O was getting her diaper changed and she was SCREAMING. Her poor little hiney is lit up like the fourth of July. Poor girl was trying to tell us all along. She has been SO fussy though, we didn't know. I felt SO bad for her and just wanted to cry with her. I gave her antibiotics, eye drops, tylenol and diaper rash cream. Got Leah cough medicine, cream for her yeast infection and a warm compress for her eye. Kate finally settled down to nurse and Daddy-O read with Leah for a while. They are now all asleep....hopefully for a while.

I know that this is going to sound bad, but I think I am getting burned out on "needy-ness". With Kate being sick for as long as it seems like she has been and Leah needing extra attention because Kate has been sick and needing to find insurance and needing to go to the doctors and needing to have this and that test done and needing to do laundry and needing to clean and needing to get groceries and medicines and need, need, need. I feel like I don't want to be needed for a while. Not even by my own kids. I don't like being here, in this state. I think I am just worn down, worn out, exhausted. I think I NEED a break.

I hope that by Monday I am back in the saddle and feeling rested. I've got a lot to do!

The count for this week - Two pink eyes, Two ear infections, One sinus infection, One stye, One yeast infection, One head/chest cold = One warn out mama

What's On The Menu

2009-04-26T22:23:00.003-05:00

Ah, things are just as crazy as ever. I feel like my life is flying by me and I am not able to catch up or sit and enjoy it. We had a great birthday party for Kate (that I will post about soon) and I am glad that is behind me (although I'm a little sad she is one). Every week I think, "It will slow down this week" and then I see my calendar. Here's some of what's on tap this week.

- We found out Saturday night, after arriving home from the party, that Kate was denied insurance with a company we have been applying for and working with for the last two months. Her current insurance ends on the 30th, as in Thursday. I am going to attempt to "appeal" the denial, but I don't think there is much of a chance. We are no closer to figuring out why she is sick all of the time. We are going to have to see what we can find in the way of private coverage and see if there is any way we can 1) find anything that will accept her in the middle of all this and 2) find something we can afford. I am sure there will be at least a month or two without coverage though. Since I have no insurance and Leah and Daddy-O's is ridiculously high, we may have to look at one of us taking a part time job to get benefits. If you could please keep all of this in your prayers, this is our number one BIGGIE right now. As you all know, (if you have ever dealt with insurance companies) this will, without a doubt, be a lengthy, patience testing process.

- Kate is going in for her one year old "well check" on Wednesday, but will probably be unable to get her one year old shots (which means she will be off schedule AND they won't be covered on insurance) because...

- Kate has been "sick" with a "cold virus" since last Monday (if you recall the chest x-ray, etc.). She hasn't seemed to feel too bad until today at lunch when we noticed her eyes were full of green goo (pink eye) and her nose has been draining the grossest, green goop I have EVER seen (sinus infection). I seriously don't get it, but I won't go off on a tangent about that all again....for tonight.

- We have some new things coming up for work and hope to be really busy with that. That is good!

- I also have at least two days of work to fit in there.

- We are also trying to decide what to do about kindergarten. Leah turns 5 at the beginning of August so she is "eligible" to start kindergarten next year. I go back and forth on what to do. Here are my thoughts.

Reasons she should go

+She is educationally ready for it (knows all her shapes, colors, letters, sounds, can write all her letters, numbers, do basic math, starting some basic reading, etc).

+She is probably physically ready for most of it. Since she is a girl we don't have to worry about her being the smallest in her class and being picked on.

+Many days I feel like she needs the time away from me and vice versa.

+She could really use the challenge and structure.

+Being the youngest in the class, she would grow up and mature faster (I'm still unsure if this falls in the "pros" column).

+She has been getting really bored at home lately. Some of this is due to Kate's health, appointments, etc., but I don't think we are near stimulating enough for her normally. This is something I CAN do something about.

Reasons she shouldn't go

-She is still emotionally young. She cries very easily and has at least one melt down a day. (part of me thinks this is a reason she should go and "grow up")

-She HATES getting up early. I am sure, if we started now, we could get her on a routine going to bed earlier and help this, but she really is and has always been a night owl.

-She still requires a "rest time" every day. She no longer naps because she was staying up until midnight, but she does lay down for at least an hour and a half everyday. Kindergarten here is all day (I think 8-3) and they do NOT give them any sort of a rest time, at all. I am not sure that she would last.

-She has not gone to preschool or Mother's Day or any sort of "everyday" program. When did try Mother's Day Out one day a week, she had no problem with the separation. I just got tired of fighting every single Wednesday morning about getting out of bed, dragging her to school late, kicking and screaming, and bringing her home for a late nap, only to stay up late that night.

So here is where I ask for advice. All of you moms, teachers or people with opinions, leave me a comment and let me know what you think, have done, would do different, etc. What I would love is to find a M-F half-day pre-K so that she could experience getting up and going somewhere everyday, but without it being such long hours. So far all I have found is all day T,W, Th pre-K. I am not sure that this is much different than just sticking her in kindergarten. I tried talking to the elementary school that she would be attending and they were absolutely NO help. I did learn that kindergarten is optional in the state of Texas, so if we did keep her out and she was really ready for it, she could "test" into first grade next year. I started kindergarten when I was 4 and didn't mind being the youngest, but it seems like things were SO different back then. Am I just being an overprotective parent? Penny for your thoughts....

Anyway, that's what's "hot" around here. I know that God holds us in the palm of His hands and that we only need to let Him guide us through. Sometimes it's just harder to feel. Please continue to pray for us with all of these pressing decisions and stress (specifically that God would open doors with the insurance issue and that we would find answers or peace with Kate's health). I am trying hard to fight my natural urge to worry, but it's getting hard. I just feel really beat down. Thanks for all the prayers!