tag:blogger.com,1999:blog-343154602024-03-07T01:19:59.032-06:00The Adventures of the Courington FamilyMommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.comBlogger370125tag:blogger.com,1999:blog-34315460.post-22238534942830422942015-06-04T01:51:00.001-05:002015-06-04T01:52:13.955-05:00What's New<br />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">I’ve gotten so many questions about Kate lately, I figured it would be easiest to just put all of the info in a note. A lot of the questions come from just wanting to understand more of what is going on and what it’s like. I hope this helps bring anyone interested up to speed. I had a very long talk with Kate’s immunologist last week and feel we are just starting to get a grasp on what’s going on. I’ve also found some support groups online that have been a wealth of information. Hearing from an adult what it is like has been so helpful! Writing this will also help me process things more “out loud”. I can’t guarantee it will be short though and will not be offended if you don’t read it all. J Also, I don’t feel like we had much info going into this ordeal and I hope and pray that we can share with other families going into something similar. God gave us two families locally to lean on and several from afar and it’s been unbelievably helpful. I hope that we can do the same at some point.</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">INFUSIONS: Kate has had 4 IVIG infusions to date. These infusions are specific antibodies pulled from 10,000 to 50,000 plasma donors (per infusion) and given to her through an IV. These antibodies are to give her body something it is not creating properly on its own, specifically IGG. It is similar to being low in say vitamin D and taking a supplement to add to what your body creates. With IVIG, these antibodies are metabolized in about 3 to 4 weeks, meaning they have to be replaced that often. Her body gets a big “peak” dose at infusion with the goal being her “trough” numbers, or her counts 3 to 4 weeks post infusion, will stay within a “normal” range. Kate has doubled her IGG numbers since starting infusions, but they still aren’t high enough. We are constantly tweaking her doses to get her just the right amount. This is a lot of guess work, as every individual metabolizes the antibodies differently. Her infusions have been every 4 weeks, but the next one will be after only 3 weeks. They are trying to see if they can’t help increase her trough numbers. The doctor (and I) will be out of town at the 4 week mark, so it works out well for our schedules too. Unfortunately, the higher the amount we give her gets, the worse the side effects get.</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">SIDE EFFECTS: The IVIG infusions have a very high viscosity. This causes the meninges, or lining of the brain, to get irritated. Some patients have no side effects from IVIG infusions, some have mild symptoms like tiredness, and yet others have horrible ones. It’s very tricky, from what I understand, to find the right balance to controlling these side effects. The reaction is different for every single person, with some having issues during infusion and some after. For Kate, she feels fine during infusion and for at least 24 hours after. Typically between the 30 and 40 hour mark, Kate’s side effects hit. She will go from being completely fine to completely horizontal in a split second. It is very frightening how fast it comes on and how out of the blue it seems. For Kate, she gets aseptic meningitis. Her head hurts incredibly bad and feels like it’s on fire (to her and to the touch). She can’t sit up, let alone walk, even to go to the restroom or throw up. She is achy all over and feels like she’s been hit by a truck. She can’t focus her eyes on anything and talks nonsense. She cries, whimpers, and giggles in her sleep. She won’t eat for 24 hours and can’t handle light or sound. Unfortunately, there is nothing we can do when it hits other than simply treating her symptoms. It’s pretty miserable for me and I can’t even imagine what it’s like for her. We give her Benadryl and Tylenol every 4 to 6 hours around the clock and Zofran for the vomiting as needed. We learned through the support group that ice packs on the head help and she’s found some relief with those. Unfortunately, the amount of heat she’s radiating causes them to go warm within 30 minutes leaving us changing them out constantly. The first few times it happened I was sure that it was because she didn’t take it completely easy after infusion, but her doctor has assured me that this probably isn’t the case. As quick as it comes on, it goes away. Usually she has 24 hours of miserable and then headaches and a hot head off and on for a week or so. Thankfully, we haven’t had to be hospitalized for the symptoms. This mommy does NOT like hospitals and will do whatever it takes (ice packs every 30 minutes, timers all night for meds, etc) to avoid them. Sometimes you can prevent side effects by premedicating, over hydrating, and slowing down the speed at which she gets the infusion. We’ve tried most all of them. This next time, we will be adding a steroid before infusion. I really didn’t want to do this because of the side effects of steroids and because she has been on so many steroids already in her life. If this doesn’t work, we will have to switch to a different “brand” of infusion and different technique where she will get smaller doses, just under the skin on her tummy (called SCIG or subcutaneous immunoglobulin), once a week instead of the IV every 4 weeks. Basically it just breaks the dose down into four smaller doses. Some patients tolerate this better, but it’s harder to make adjustments to get a patient’s trough levels up to normal this way. This may be an option we look into after her trough levels come up because we can eventually do them at home.</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">C-DIFF: Kate was diagnosed with C-Diff, an intestinal infection, back in January. She was having some stomach issues at the time and I think it may have been an unrelated finding on one of her samples. It is basically an overgrowth of bad bacteria in her gut, often caused by antibiotic use. With her having been on more than a hundred rounds of antibiotics, it’s not surprising. Ironically, the treatment is a very strong antibiotic that kills off the good bacteria, like other antibiotics, but also kills off the bad bacteria, giving the gut a clean slate again. We’ve treated for this 3 times now since January with no luck in killing it, despite enormous amounts of probiotics to help populate the good guys. The nasty antibiotics did kill off all sorts of things leaving her with a bad case of thrush each time. We then had to treat that with an antifungal, all 3 times. In the end, we’ve come to the conclusion that the C Diff is colonized, or has set up residency in her gut. Kate does not currently and never has had the symptoms of C Diff. In the end, when faced with the decision of leaving it or a fecal transplant (yes, for real... no, don’t Google it), we decided to leave it. More than likely it will create an issue at some point, but for now we are leaving it be. There have also been some studies on drinking the IVIG solution to treat the gut. We may look more into that versus the number 2 option……</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">IS IT WORKING: This has been one of my biggest questions, too. With all of the “sick care” during these meningitis periods, it hasn’t felt like she’s been well. On top of that, the treatments and meds for C Diff, followed by treatment and meds for thrush, hasn’t felt like much of a break. We still seem to be at the doctor and pharmacy a LOT still. THAT SAID, when reviewing her history for the last 4 months, she has only been truly sick one time. That is huge! She had bronchitis, croup, and a sinus infection all at the same time, BUT it cleared up with just 1 round of antibiotics for 14 days. That is also huge! She hasn’t had any other infections, stomach bugs, or other viruses since starting infusions. So while it certainly doesn’t always feel like it, I think it truly is making a difference. The good news is it will only get better from here. This week I asked Kate if she thought it was helping. Keep in mind she has to endure the infusion and THEN meningitis and the horrible side effects, knowing that it is coming. She said she feels much better and feels happier. I don’t know that any of us, including her, know how bad she’s felt every day prior to. I do know that she has a ton more energy (not always a good thing!). She calls IVIG her “go go juice” (thank you, Karen L! -G) and some days I wish I could have just a shot of it. Glenn and I noticed that we have not ever heard her laugh as much as we have in the last few weeks. This gives us a little more patience in dealing with the ugly of it for now.</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">DIAGNOSIS: If you’re reading this, you have no doubt heard that our heart’s desire has been to have a diagnosis for Kate for many years. I’ve believed that it would help us in caring for her and finding a treatment that would work. While there is truth to that, I put far too much weight in the idea that “I” could do anything about any of this. With some gentle prodding, I’ve come to realize that I need to get over that. A few weeks ago I reached a point, after entering in to a place of anger, that I suddenly didn’t want a diagnosis. Honestly, the thought of one felt like it would box us in. On Wednesday I talked at length with our doctor and asked a lot of questions, as I needed to have a better picture of what things would look like past the next 4 weeks. There is benefit in just focusing on the now, but with increasing bills and decisions to make, it’s hard to plan life 4 weeks at a time. When I asked about a diagnosis, the doctor said, “Well, of course we do. We wouldn’t be doing this without one.” Ha, so typical. For us, we never really heard anything specific about a diagnosis. Sure we heard, “this number is low” and “such and such is off”, but none of that meant much to us. They continued to run test after test and were obviously searching for something. To the doctor, she had found the WHAT, but is still looking for the WHY. She has two diagnoses to date and has some pending labs from 2 months ago that we are waiting on results for which are looking further at whys. After those results are in, they really have nothing else they can test for at this time. They still take 3-15 vials of labs at every visit, though that may decrease after this. She has been diagnosed with hypogammaglobulinemia and Specific Antibody Deficiency or SAD for short. I’m not sure why they couldn’t come up with an abbreviation of the first. J Hypogammalobulinemia means her immunoglobulin levels are low, specifically IGG for Kate. Specific Antibody Deficiency means the antibodies she does create on her own, don’t function the way they are supposed to. This means her body doesn’t mount the proper response to viruses and bacteria. This became apparent by the fact that her immune system doesn’t retain knowledge of a response to vaccines. In the case of vaccines, it leaves her with major gaps in protection. Worse yet, her body can’t retain knowledge of viruses and infections she’s been exposed to. So every virus and infection she’s exposed to, her body has to learn to fight over and over again, as if it were the first time she was exposed to it. Both are genetic issues that have been there since birth. Both are treated by IVIG infusions. It blows my mind how it all works, but the 10,000-50,000 donors give Kate’s immune system the knowledge of how to fight based off of illness the donors have been exposed to and immunizations they’ve received. It is mind boggling, for sure! It’s like downloading an immune update to her system every few weeks.</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">WHERE DOES THAT ALL LEAVE US: Basically we are just trying to hang on for the ride. Knowing that this will be a long term thing leaves me feeling like I need to settle in to a new norm and get “used” to it. However, this has been WAY more disruptive than we expected. I can’t believe how fast 4 weeks goes by. It seems like for now our weeks roll by like this: We have infusion day which involves a minimum of 7 hours at the med center. The stress level is high that day, but Kate has handled it like a champ the last two times. We have been having Leah go to a friend’s house, which usually means a midweek sleep over to avoid more stress that morning. We all spend the next day recovering and trying to take it easy and prepping for the inevitable. I have to make sure that we have Gatorade, groceries, and medicines on hand, and any other errands done, as there is no running out to get them once things hit and there is no telling when it will hit. The day after seems too easy and it’s easy to forget she’s going through anything. Then, the meningitis hits at an unexpected time and we try to control symptoms and not freak out. With every four hour medicines, not much sleep is gotten in these days. She, then, starts feeling better and we tiptoe hesitantly back into normal life, praying she doesn’t overdue it. About a week later she’s feeling great and full of energy. We carry on with normal for 2 weeks, just long enough to forget the bump ahead. The days prior to infusion, Kate starts feeling down again. We haven’t pinpointed if it’s the levels wearing off so that she physically feels worse or if she’s just anxious and sad about the next infusion, knowing what it brings. Then it’s rinse and repeat…. We will continue homeschooling for next year. I cannot imagine what it would be like to have either one of the girls in school during all of this. Thank God for that blessing as exhausting as it is.</span><br />
<span style="background-color: white;"><br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" /></span><span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">Kate is an absolute rock star. I don’t know that she could handle all of this better. She amazes the nurses, doctors, child life specialists, and everyone else, every time. She is tough, brave, smart, and keeps a sense of humor through it all. She always puts up a fight for her IV and I don’t mind that she does. She is never disrespectful about it and always responds obediently. I don’t ever want her to get to the point that she doesn’t want to fight it. Yes, she’s getting used to it and knows what to expect. But I want her to have that little bit of fight in her always.</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">Glenn and I are doing fairly well. Overall, it feels like a mechanical bull ride. Who knows what way is up and what direction we are going, just avoid hitting the mat. Our communication has much improved, Glenn has gotten much more involved in Kate’s care, and we seem to be in step with each other. I can’t speak for him, but for me it’s been an uncomfortable season. I’ve had to start learning to ask for help and even texted a friend regarding chicken nuggets the other night. If you know me well, you know that is some serious desperation. J I’ve spent a lot of time thinking out loud and have found myself in a place of beautiful, uncomfortable anger. I think my inability to do anything in this season has left me alone with my thoughts and feelings. I’ve had to follow my thoughts of “if God______, then _____” through to the end instead of finding a way to fit ME in there. It’s left me sorting through feelings, looking for the roots, and trying to learn to point those in the right direction. I’ve become angry about Kate’s health and the path that has been handed to me, but instead of shutting it up because that “feels wrong”, I’ve been able to follow that all the way through to the fact that I am mad that Satan has ruined this world and damaged my innocent daughter in that. It absolutely sucks to walk this path and that is okay to say. I just have to constantly watch that my anger and disappointment stay towards Satan and not God. Trying to find God’s truths in this broken place can be so difficult and Satan would love for me to turn that anger towards the Creator of all perfect things. I still struggle to find a place that I can honestly say “It Is Well” with me, deep down in my soul.</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">PRAYER REQUESTS: We absolutely covet your prayers. To know that we are being lifted up and covered by so many people’s prayers, is the coolest part of this whole journey. I don’t know how people handle life without faith and friends like you all. Thank you from the bottom of our hearts!</span><br />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">- Obviously, the biggest one is for healing for Kate. We’d love for her the infusions to give her system a break and a chance to restart. We pray that God will heal her completely. While we wait for healing, we pray for protection for Kate, spiritually, physically, and emotionally. It’s no shocker that something like this comes with huge risk in all these areas. We pray that this whole ordeal will not negatively affect her relationship with God and that we will be able to nurture that. Often she hits us with loaded questions and it leaves us feeling like we are traversing a field of landmines.</span><br />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">- We would love to find the perfect balance of having her numbers where they need to be without side effects. We know that He is more than able to do that and pray that He guides that process.</span><br />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">- Glenn and I are faced with so many decisions every day regarding all of this. Please pray for wisdom for us, for protection for Kate in our decisions, that we will have wisdom beyond today, that we will have unity, and that we will follow His leading. Also, that we will stand firm in our decisions and not let doubt creep in. It is so easy to second guess every single decision that we make. Pray that God would use this to strengthen our identity in Him, both individually and as a couple. The logistics of everything that having a chronically sick kid involves can be crushing sometimes. We’d love prayers for wisdom in finances, time management, balance of priorities, and knowing how to take care of and serve ourselves and each other well. Pray that we would all choose joy in every step of this journey.</span><br />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">- It’s been heavy on my heart that Leah doesn’t get lost in the mix of this all. We have tried to make this a priority all along, but as a mom I still worry about it. She seems to be doing great. I pray that if she is struggling or begins to, that God will show me that clearly and that he will show me how to better minister to her. I pray that as only He can, he will use this to grow her character and testimony.</span><br />
<br style="-webkit-text-size-adjust: auto; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;" />
<span style="-webkit-text-size-adjust: auto; background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 20px;">Thank you friends and family for doing life with us, even when it gets messy. We are blessed by you all!</span>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-56314309377915805852014-09-10T00:09:00.000-05:002014-09-10T00:28:28.133-05:00Eyes Wide OpenedIt's been a long time since I've blogged. I got tired of journaling nothing but medical updates, which seemed to be my season, so I gave up on it. Ironically, it's what's brought me back to the blog.<br />
<br />
For those of you who have followed the girls health sagas, not a lot has changed. Kate still is sick all of the time and Leah still has muscle and fine motor issues. Praise God, Leah is in a very stable season and is doing fantastically. We seem to have found a good schedule and regiment for her and we are so grateful for that! Hopefully, someday soon, we will be able to say the same for Kate.<br />
<br />
In April, I took Kate in for her 6 year old well check. I updated the pediatrician on where we were at with Kate's stuff. Basically it was the same place as always; 12+ antibiotics a year (for the last 6 years), many daily meds, specialists wanting to do more surgeries (she's had 6 already), etc. The only improvement we've seen in 6 years is a decrease in frequency of oral steroids. While this is terrific, it is at the cost of high dose daily inhaled steroids.<br />
<br />
After discussing where we were at, I mentioned a wart on K's toe. We'd treated it with OTC products on and off without much success. I asked him to go ahead and take care of it. He and our favorite male nurse, who is Kate's honorary big brother, went to work cutting and freezing the spot on her big toe. They spent 45 minutes working on it, while she spent 45 minutes pinned to the bed screaming. When they finished, her pediatrician recommended we see an immunologist again. This was on a Monday and when we left, we had an appointment at TCH immunology clinic for that Wednesday. Our doctor is wonderful, but I should've known, you never get an appointment with TCH that quickly.<br />
<br />
We went to the appointment and spent hours going over history. The doctor had already met with K's pulmonologist and the immunologist she saw as an infant. She was very thorough and VERY concerned with the wart. Apparently, unbeknownst to me, they had cut somewhere around 14 spots out of that one wart we saw. To me this was a bit of a shock, as you could only see one little spot, but nothing too worrisome. To the immunologist, it said a lot. I hadn't put together that warts are indeed a virus. So is the mulloscum she has had on her skin for the last two years. To the immunologist, this spoke loudly to what was going on inside Kate's body.<br />
<br />
We spent the whole day there and then got up the next morning to go back for more testing and history. She had a full allergy work up and somewhere around 10 vials of blood drawn again. We have been back many, many times for visits and labs and will continue to work with this immunologist to try and find a treatment plan that will work for Kate and, Lord willing, a diagnosis.<br />
<br />
In the meantime, we had a huge issue come up. At the very end of May, I was doing the traditional Saturday night scrub down on Kate and went to cut her toenails. I noticed something on her foot that hadn't been there a few days prior. Kate immediately melted down and tried to convince me it was sand, despite having just exited the shower. She insisted she had, "stepped in something sticky and then some sand". I was shocked at what I saw. I freaked out, Glenn came in and he freaked out and Kate was hysterical at the thought of having to get this frozen off. I got her to bed and texted a friend asking for prayers. She asked if another friend could call me. She is a mutual friend from church, who had spoken to me before about Young Living essential oils. I had gone to a class a few weeks prior, but wasn't really buying all the claims they made. I met with the teacher afterwards and asked about Kate's health since she too had a daughter who had been sick a lot. I got the expected answer of, "Oh my daughter wasn't that bad". I didn't put much weight in oils doing anything for Kate. So this mutual friend called and offered to bring some oils to church for us to try.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWt4tGdupTRZ2y0TrgKr6MPkEDJuZwwDKdlY44Ba8WSN3XZsMEfHYDXidzDZSlodjiBenFY8YSTLf3hHHLoqzxCMkUa5TFVmmFJUC-G1ZC4PcP7AxE_K90FRknzb96VTvnJfw/s1600/IMG_9049.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWt4tGdupTRZ2y0TrgKr6MPkEDJuZwwDKdlY44Ba8WSN3XZsMEfHYDXidzDZSlodjiBenFY8YSTLf3hHHLoqzxCMkUa5TFVmmFJUC-G1ZC4PcP7AxE_K90FRknzb96VTvnJfw/s1600/IMG_9049.JPG" height="240" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
This is what her poor foot looked liked the next day when it finally donned on me to take a picture of it. The spot under her middle toe changed and spread hour to hour literally. Since it was Sunday and she was having trouble walking on it at this point, I decided to give the oil a try. I called the pediatrician first thing Monday and they immediately got busy getting her the first available appointment with dermatology. They then called with that information. Issue is, that first available appointment? 18 months out.....EIGHTEEN MONTHS out....while I'm literally watching this stuff take over her foot. It was to the point she couldn't walk on it because it hurt and felt like she was "walking on marbles". I had just confirmed plans and tickets for an upcoming trip to Africa (hopefully I'll get around to posting about that amazing trip) and was panicked and looking at backing out quickly. We finally found a dermatologist that could see her in two weeks. So we decided to give the oils a try while we waited. The doctor was pretty sure they would have to inject the area with chemo to kill it all off. Apparently, the external part of the wart is only a tenth of what is really under there. We reached out for prayer, had the elders pray over her and began putting Frankincense oil on her toe twice a day.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPK3ayj_FizozKbcqbaBG_En6R4ae3hhGIErcwym0Cmtep3Y8plpkPotlP7fGzkWwuFGiJagfhTvazGX8ZTjVYBifbyKDX_gutJ8p0WbMv1X13TGsPnZ3kI_zPNCZth0aYPRc/s1600/IMG_9092.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPK3ayj_FizozKbcqbaBG_En6R4ae3hhGIErcwym0Cmtep3Y8plpkPotlP7fGzkWwuFGiJagfhTvazGX8ZTjVYBifbyKDX_gutJ8p0WbMv1X13TGsPnZ3kI_zPNCZth0aYPRc/s1600/IMG_9092.JPG" height="320" width="240" /></a></div>
<br />
She was excited to try ANYTHING other than going to the doctor.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0d4ULhysD95Rx0i_Zuka8xxxyx2QedSJoS3cook9JxM25-B9OcjfcjuaFRWWHkqRuhJkp-uLs-0TRSPTdwW06IeDOBvbE1_iaGYuc02-I63wWlYanl5DlWson4VOujfoO99U/s1600/IMG_9094.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0d4ULhysD95Rx0i_Zuka8xxxyx2QedSJoS3cook9JxM25-B9OcjfcjuaFRWWHkqRuhJkp-uLs-0TRSPTdwW06IeDOBvbE1_iaGYuc02-I63wWlYanl5DlWson4VOujfoO99U/s1600/IMG_9094.JPG" height="320" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: left;">
We noticed some minor changes, but couldn't really tell if they were for the better or worse. This next picture was taken on Thursday night at bedtime. All of a sudden, we were becoming believers in YLEO. You could definitely see changes happening and she was back to walking normally. This was also the night that we found something on her sheets and spent way too long at bedtime with our microscope trying to decide what it was. :)</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSr2viypHH26ef9VUOP2jDdUFxbpX6KzR0gAMYyOisPSFc1GBIr2AqagFZrLC5G0BKmTlbdRXZLmIx7P7dwYUcGmojGPiEoqM2lOghfqiK6e_hPwFrG0qJkQv22vDhZUNx4C8/s1600/IMG_9106.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSr2viypHH26ef9VUOP2jDdUFxbpX6KzR0gAMYyOisPSFc1GBIr2AqagFZrLC5G0BKmTlbdRXZLmIx7P7dwYUcGmojGPiEoqM2lOghfqiK6e_hPwFrG0qJkQv22vDhZUNx4C8/s1600/IMG_9106.JPG" height="320" width="240" /></a></div>
<br />
We continued applying the frankincense morning and night through Sunday. Monday afternoon, we went to the pool with friends and then stopped by my folks house to pick something up. While we were there, Nana asked to see K's foot. She commented that it was looking good and that it looked like things were about to fall off. I responded something like, "Yeah, we are starting to notice some changes", when she said, "No, really. I think it's about to fall off!". What happened next was like a Sci-Fi horror film. Kate flipped her foot over and began pulling clumps of blood vessels out of her foot. I use the term "pulling" loosely, as they were more just falling off. There was no effort to it.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjripBJ0L3qu8TeG0CSeQoLFxrVEBLqqbvxSBhWdCQgNMtdQaWye-YsqR3z-OMV4lfXCAsRN3o4-Iq11rjFAusCOyuUPyu5kO6cvonjxcjqdGt9DcP_09Cte_SE_wpDdCq-Aw4/s1600/IMG_9113.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjripBJ0L3qu8TeG0CSeQoLFxrVEBLqqbvxSBhWdCQgNMtdQaWye-YsqR3z-OMV4lfXCAsRN3o4-Iq11rjFAusCOyuUPyu5kO6cvonjxcjqdGt9DcP_09Cte_SE_wpDdCq-Aw4/s1600/IMG_9113.JPG" height="320" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr4F8kBbnYa1CStJ4dJxch0vvm7gCb4Z3Wtbmu654o3fyWduLIW6UD7ZXnxxe_3ZV-V-CaX1070qhkJ_m6u1evqNPUv1KeXn6DBVst3oflrGDYaU-CAqkTb_c1_x_T2k2U-hs/s1600/IMG_9111.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr4F8kBbnYa1CStJ4dJxch0vvm7gCb4Z3Wtbmu654o3fyWduLIW6UD7ZXnxxe_3ZV-V-CaX1070qhkJ_m6u1evqNPUv1KeXn6DBVst3oflrGDYaU-CAqkTb_c1_x_T2k2U-hs/s1600/IMG_9111.JPG" height="320" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: left;">
They literally all popped off! She had one last, little spot that came off that night. I could not believe how healthy the skin looked underneath. The OTC's we'd used were acids that literally burn all the tissue, good and bad. The freezing and cutting definitely damaged the surrounding skin. The oil left perfect, healthy skin. This was absolutely amazing to me. This picture was Tuesday morning.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwgtNQrBjk0nhg9O51FMhXGueauIT5IgHGIS7NHYH6yWPQGt6qybUzplLQUojmaQBvsh9NJJG80SfaXwYvR274FRwVakbkvkySie-6sAbkK8lBKpCV8gzEQSYCC3uWZ_KI2t4/s1600/IMG_9146.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwgtNQrBjk0nhg9O51FMhXGueauIT5IgHGIS7NHYH6yWPQGt6qybUzplLQUojmaQBvsh9NJJG80SfaXwYvR274FRwVakbkvkySie-6sAbkK8lBKpCV8gzEQSYCC3uWZ_KI2t4/s1600/IMG_9146.JPG" height="240" width="320" /></a></div>
<br />
Kate's foot is still perfectly clear! 8 days, 15 applications and she was back to normal. We kept the appointment with dermatology just so we would be able to get in sooner if we needed to in the future. We had to take pictures of what was wrong with her now perfectly healthy foot, as well as the baggie of "parts" she insisted on keeping. I am so glad that God found a way to open my eyes to other possibilities despite my stubbornness. I truly believe there is a time and place for modern medicine, I work in a pharmacy, for crying out loud, but I am so excited to see the results we are getting with oils and to be learning more about them.<br />
<br />
What does this mean for Kate? Since we are in the beginning stages of testing for immune deficiencies, we are being very careful with what we do right now. We would love to oil her all up and watch what happens. However, we feel it is very important to get a clear diagnosis for her. The doctors don't seem to think the oils will effect her blood levels. After watching what they did to her skin, from the inside out, I am not so convinced they won't. On one hand, that is great news as we would LOVE to effect everything inside of her. On the other hand, we don't want all of her labs to have false or manipulated numbers and have her dismissed as normal. So for now, we wait. If we reach a point where they don't offer us any more options or diagnosis, we will be treating everything with oils to see what happens. How exciting to finally have an option for a plan B and a wonderful one at that!<br />
<br />
The rest of the family is using them often and we are all in love with what they are doing for us! If you have any questions about YLEO, please feel free to contact me. I'd love to be able to share more of the testimonies that we, personally, have seen. Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com3tag:blogger.com,1999:blog-34315460.post-61792502148726663052012-03-26T21:42:00.003-05:002012-03-26T22:51:22.362-05:00"Normal" By NowI'm going to rant and I apologize in advance. I know it's ridiculous to put something out there for everyone to see and ask "everyone" to keep things confidential, but I am going to anyways. Please keep these matters in your prayers, but please be sensitive to the feelings of my sweet daughter too.<br /><br />I should be used to this by now, but I'm not certain I ever will be. The waiting, the doctors, the uncertainties, the tests, the questions, the tests that lead to more questions and more doctors, the doctors who won't simply say "I don't know", the waiting rooms, the copays and deductibles, the endless prayers, the explaining to my kids when there aren't any explanations, and so on and so forth. When does it end? How far do we go? Do we keep trying or do we quit?<br /><br />We got Leah's biopsy final report today and everything was "normal". The only problem is things aren't normal. Leah still struggles with muscle weakness. She's made great strides in some ways, she's learned to ride a bike 2 wheeled. In many other ways she still deals with weakness though. She's had lab after lab run to the tune of $50,000 and everything is "normal" in the end. She still struggles with putting on weight and despite eating more that she ever has this year, growing is still slow going for her.<br /><br />She's 7 and on a BiPAP machine every night because her muscles aren't working well enough for her to breath enough to really sleep. We know she needs it. She couldn't have faked or skewed the tests. We see the difference in her emotionally and physically when she does use it and so does she. When your CHILD tells you, "I like how my BiPAP works because I don't have to be afraid I'm going to run out of energy when I use it. I can just keep going and going" it kind of breaks your heart and gives you peace at the same time. Still, it's not "normal". We are on our 7th mask in 2 months to try and find the perfect fit for her sweet face. I've even gone to the extreme of cutting up one of Glenn's silk shirts to make soft liners for her mask so they would be more comfortable. She's gone to school on many occasions with marks on her face from the BiPAP masks rubbing her raw. Worth it? YES Normal? NO Every night she asks, "why do I have to do this again?" and I fumble for an answer that makes sense. The truth is I don't know.<br /><br />Then there are the BIG issues. The pain that is so intense at times that she is on the verge of vomiting. You never know when it's going to hit or what will set it off. Nine months ago she started having accidents. They were very sporadic and seemed to us like a possible UTI or just waiting too long and being too distracted to go. Sometimes it was an issue with not being to work zippers or buttons on her clothing so we've modified what she wears. We've been in for many urinalysis and they are all "normal". But here's the thing. It's not normal. It's getting worse. It happens at home, it happens in public. I'm not talking a little trickle, oopsie accident. I'm talking about a full bladder in the shoes accident. It is absolutely humiliating. She is so embarrassed and angry about it. They've gotten more and more frequent and the urgency of her need to use the bathroom has increased greatly too. When she's gotta go, you've got seconds at most to get her where she needs to be or it's too late. We've talked about not waiting so long, about not ignoring the little signs, etc. until we are blue in the face.<br /><br />It seems that if distraction or waiting too long were the cause, at her age, she would have caught on by now and would compensate for it. But they continue to get worse, not better. She has been fully potty trained since she was 2 and has never had any issue like this before. Is it psychological? Is it behavioural? Is it physiological? Despite the doctors lack of concern over it, I as her mother will tell you it's NOT "normal". What would cause a child this age to have a sudden onset of this? She is shy, timid and does not like to draw attention to herself. She is humiliated when it happens and becomes hysterical when I have to help her take care of the mess. It's been pretty rough on her and it's indeed not "normal". If it's psychological, fine, lets deal with it. We've spent hundreds of dollars on play therapy and been told it's not, but we can go back. If it's behavioural, fine, let's deal with that. But with all that's going on does it seem so far fetched that maybe it is physical?<br /><br />I warned her teacher and the school nurse about what was going on and asked if we could come up with an emergency plan just in case this happened at school. This was one of my biggest fears as I can only imagine the humiliation that would occur. Last week I picked her up early for therapy and as she got in the car she told me that she had an accident at school. My heart sunk. She explained she had taken care of it with the spare clothes in her bag and that it was okay. I was surprised at how well she was handling it. Then I realized she had the same pants on. I sighed a sigh of relief realizing we were off the hook this time, it was just a little accident. When I asked about specifics she shared something that just about ripped my heart out.<br /><br />She had been at PE and felt like she need to go potty. She went to tell the teacher and knew it was too late. She went away from the other kids and hid. She was too embarrassed to tell the teacher. Just then they paged her to the office because I was there to get her for therapy (Praise GOD!). She ran in and grabbed her bag and went to the bathroom to change before coming out. It was then that she told me it was her bowel, not her bladder. I honestly didn't know what to say or do so I went into "deal" mode. She was fairly confident that no one saw her or knew. I can only pray so. We got to therapy and I took her to the bathroom to make sure she was all cleaned up. The mess was bad despite her best efforts to do what she could with what she had. Once again this wasn't anything "minor" this was an entire accident. She was hysterical and on the inside so was I. She realized our "spare" clothes that we keep in the car weren't there because she had used them earlier in the week for a different accident. She kept crying, "please don't make me wear a diaper". I scrounged enough clothes together (thank God for that not growing part and a pair of 4T panties) and she went off to therapy. I on the other hand walked out into the woods and fell apart.<br /><br />After a sobbing phone call to my mom, I called her pediatrician and her MD doctor. THIS is NOT normal. Or is it? What is normal? What isn't? How do you know where the line is? Leah has always had signs of some underlying muscular issues, but what now? What's next? Is this permanent? Is it a one time thing? What is going on? Is it too early to panic or is it too late? Should I have made a bigger deal out of the bladder issues? If so, to who? Two days later I heard from the pediatrician and he wants an MRI of her spine and brain done. He doesn't think it's "normal" but doesn't know what to make of it. Her MD doc finally called today, 5 days later, and said that since her biopsy was "normal" he'd do an MRI if that's what we wanted. He "wasn't ready to say that this had anything to do with anything muscular" whatever that means.<br /><br />Is this normal? Quite honestly I don't care. I am so tired of the run around. I am tired of doctors who want to treat their "specialty" instead of MY DAUGHTER. I am tired of trying to wrap my mind around it all. I'm tired of worrying about what symptom is next. Or who I need to call to make sure they will schedule whatever needs to happen next. Or which doctor is going to care enough to do anything about it. My daughter is hurting, physically and emotionally and probably psychologically too. I want help for her. I want peace for her. I want comfort and rest for her. I want NORMAL for her. Is that abnormal for a mom to want? If so, I guess I'll just have to be abnormal.<br /><br />God give me patience, strength and peace. Help me know when to push and when to back off. Help me comfort and guide my daughters through this "abnormal" world we live in and help us find and live in the "normal" your grace grants us. Give them both peace that passes ALL of our understanding.Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com2tag:blogger.com,1999:blog-34315460.post-35993483251900731132012-03-26T21:09:00.004-05:002012-03-26T21:41:59.298-05:00Muscle BiopsyLeah had her deep muscle biopsy done in January. They didn't give her anything to take the edge off until she was out of my sight. Apparently when the doors closed after we said goodbye, Leah wigged out. The anesthesiologist said she put up a good fight and refused to enter the room or get on the table. I don't know how they finally got her in, but the hand shaped bruises all over her upper arms the next day gave some indication. When she came out of surgery her oxygen dipped and she required some support. Because of this, they kept her 24 hours for observations. Of the 24 hours, we spent from 7 am to 10 pm in pre op and post op. Apparently when the are out of rooms in the hospital you get to just hang out in post op. This is less than favorable as post op is a very noisy, bright, hustle and bustle place. People come and go constantly, nurses holler orders to each other across the room of 50 patients in varying degrees of anesthesia. Kids wake up disoriented, nauseous and cranky. As soon as they settle in, they are discharged and you start over again. There are no rooms, you are all in there together. It's less than favorable conditions, but it could be worse, I know.<br /><br />Leah wasn't allowed to have anything to eat or drink since the night before so by 2 o'clock she was starving and Popsicles weren't cutting it. I finally convinced a nurse to look the other way while daddy smuggled in some McDonalds for her. In the 15 hours of waiting we had at least 7 different nurses assigned to us, our favorite being a male who reminded us of a close friend. He had a dry sense of humor and Leah wasn't 100 percent sure about him but enjoyed the banter. She rarely complained of pain, but when I had to take her to the bathroom it was major drama (see: all out hissy fit, including punching mommy in the head over and over). I insisted that the nurses give her something for the pain and one of the nurses went to find something. When they returned they gave her a medicine cup and commented that this was "all they could find". When I asked about what it was, they told me Tylenol. Not prescription strength with codeine, but good old OTC Tylenol. I distinctly remembered the surgeon stating that Leah would have strong pain killers to go home on, so I found this odd.<br /><br />By 8 o'clock there was no sign of a room although we had shut down the day surgery post op room and transferred to a different building's post op room. Leah's pain level was fine while she was laying flat in bed, but was horrible when she was forced to move. I pushed the pain medicine issue with the nurses and they finally decided they would check with the doctor. Indeed she was to be getting Lortab, not OTC Tylenol. BIG difference. By 9 o'clock we found out we were getting a room and by 9:30 the stars had aligned and it had been cleaned and we were ready to go. Then the nurse discovered Leah was supposed to have labs drawn at 7 o'clock and oops they forgot. We would have to wait for that to be done before we transferred so that the nurses wouldn't get in trouble. By this point I was exhausted and not very happy with our "stay" so far. We eventually got to our room, had labs drawn and got some real medicine. We both slept as best we could. They discharged us the next day around lunch time and we were on our way.<br /><br />Leah spent the first day being carried around and perfected the "Leah shuffle", where she would wiggle her hips back and forth while sliding her feet across the floor to get around. It seemed more difficult to chase the pain since it had already been out of control the day before and she dealt some with the anxiety of pain. Some sweet friends let us borrow crutches and a wheel chair and that made things so much easier for her. Within a week she was getting around pretty well. She has had an abscess that has been a real persistent pain, but otherwise she's all healed up. She has a pretty dark scar on her thigh, but she is getting around as good as always. We are glad to have that all behind us.Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com0tag:blogger.com,1999:blog-34315460.post-6418937241993574812012-01-25T22:49:00.002-06:002012-01-25T23:38:35.968-06:00Here We AreI will blog again someday...<br />This will not just be a medical blog someday...<br />This will include precious pictures and funny stories of my darling children again someday...<br /><br />But for now, here we are...<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />- 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.<br /><br />- 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.<br /><br />- 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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />As always, your prayers are much appreciated!Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com0tag:blogger.com,1999:blog-34315460.post-31065768979487815232011-09-25T22:29:00.004-05:002011-09-25T23:23:29.113-05:00Sleep Study, Heart Tests and PT<div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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. </div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com0tag:blogger.com,1999:blog-34315460.post-64395982626388757122011-09-25T21:47:00.007-05:002011-09-25T23:23:18.891-05:00Out With the Old, In With the New<div>The last few weeks have been <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">difficult</span> 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 <span id="SPELLING_ERROR_1" class="blsp-spelling-error">suv</span> 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 <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">significantly</span>, 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.</div><div> </div><div>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 <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">facade</span> 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 <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">embarrassing</span>, 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". </div><div> </div><div>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.</div><div> </div><div><span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">With</span> the exception of our kids and marriage, every single one of these things are little things involving material <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">possessions</span> 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.</div><div> </div><div>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 <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">received</span> 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.</div><div> </div><div>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 <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">drivable</span> 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 <span id="SPELLING_ERROR_9" class="blsp-spelling-corrected">health care</span>. 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.<blockquote></blockquote></div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-57248488554440621662011-09-09T22:45:00.004-05:002011-09-10T00:11:51.306-05:00MDA Clinic<div>Well, I guess I am getting good at being the squeaky wheel.</div><div> </div><div>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. </div><div> </div><div>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. </div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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?</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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!</div><div> </div><div>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.</div><div> </div><div>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.</div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com2tag:blogger.com,1999:blog-34315460.post-11242318911388052952011-07-13T21:39:00.006-05:002011-07-13T23:47:38.178-05:00This Squeaky Wheel Got Greased<div>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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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. :)<br /><br />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.<br /><br />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.<br /><br /><br />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!<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />I know this post is long, but here are just a few ways we've seen God at work in this:<br />- 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.<br />- 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.<br />- 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.<br />- 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!</div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-38954051571485444592011-07-02T16:41:00.004-05:002011-07-02T20:25:31.410-05:00A New Phase of Specialists and Tests<div>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!</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div><br />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.</div><div> </div><div>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.</div><div> </div><div>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. </div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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!</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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.</div><div> </div><div>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?</div><div> </div><div>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!</div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-27946481726051377802011-02-02T23:17:00.002-06:002011-02-02T23:19:50.132-06:00Wouldn't You Know ItWell, 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.Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com4tag:blogger.com,1999:blog-34315460.post-76030101793264006852011-01-26T00:29:00.004-06:002011-01-26T00:33:43.716-06:00Where It All StartedWe 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.<br /><br />Here's (or more appropriately "h-ears") to new beginnings!Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-3885282567131809952010-04-18T23:24:00.003-05:002010-04-19T00:50:01.329-05:00Plan B or is it T?<div>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.</div><div><br /></div>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.<div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com2tag:blogger.com,1999:blog-34315460.post-9892299598286631242010-04-11T01:08:00.004-05:002010-04-11T02:25:12.429-05:00Pink SlipOn 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.<br /><br />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.<br />At our last appointment the plan was to:<br /><br />- Keep doing what we had been doing.<br />- 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.<br />- Do a CT scan of her lungs to check for permanent damage.<br /><br /><span style="color:#000000;">He started the conversation explaining that she didn't need a repeat brushing since PCD (ciliary issues) are so rare.</span> <span style="color:#ff6666;">I don't think that "rare" means there is no chance you have it. I believe that would be described as non-existent.</span><span style="color:#000000;"> </span><span style="color:#000000;"><span style="color:#000000;">He continued explaining that since Kate has been well for the past few weeks, she's showing that she is getting bigger and healthier.</span> </span><span style="color:#ff6666;">Yeah, maybe. Doesn't change the results from the last test though. </span><span style="color:#000000;"><span style="color:#000000;">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.</span> </span><span style="color:#ff6666;">While I'm no math whiz, 30-40% accuracy on a test + a brief period of health = 99% accuracy? </span><span style="color:#000000;">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.<br /><br />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. </span><span style="color:#ff6666;">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.</span><span style="color:#666666;"> </span><span style="color:#000000;">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.</span><span style="color:#333333;"> </span><span style="color:#ff6666;">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? </span><span style="color:#000000;">I clarified that this might take a while to get to that point (see: decades!) and he agreed that it would be fine.<br /><br />His other point was that it isn't going to change the outcome or treatment.</span> <span style="color:#ff6666;">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.</span><span style="color:#000000;"> </span><span style="color:#000000;">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.<br /></span><br />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.<br /><br />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.<br />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.<br /><br />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?<br /><br />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.<br /><br />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.<br /><br />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:<br /><br />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)?<br /><br />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.<br /><br />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.Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com0tag:blogger.com,1999:blog-34315460.post-48396963521370189962010-04-08T16:16:00.004-05:002010-04-08T17:58:59.071-05:00History and a Big StretchYou 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.<br /><br />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.<br /><br />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.<br /><br />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?<br /><br />Problem is:<br />1) We still have no answers.<br />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.<br />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?<br />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).<br /><br />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.<br /><br />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.<br /><br />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 <a href="http://couringtonfamily.blogspot.com/2009/04/shes-talented.html">familiar</a>? 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".<br /><br />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.<br /><br />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.<br /><br />On a positive note, the MRI on Kate's arm (for the lesion on her arm found on an xray <a href="http://couringtonfamily.blogspot.com/2009/04/i-am-not-sure.html">last year</a> 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.<br /><br />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!Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-14697745643516612912010-02-16T21:45:00.003-06:002010-02-16T22:14:13.463-06:00If I Don't Find Something to Laugh At.......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!)<br /><br />1. Last year at the zoo, my favorite animals had to have been the ones found by Leah, the pokeypine and the peehawk.<br /><br />2. Leah to Mom "Do I have your ears? Cuz..... I love you!"<br /><br />3. After an unfortunately timed bathtime poop by Kate, Leah was overheard yelling excitedly, "Mom, there's seaweed in the bathtub!".<br /><br />4. Leah used to describe the clouds as mashed potatoes.<br /><br />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.<br /><br />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!<br /><br />7. "This tastes like dryer blankets"<br /><br />8. In an all too common dramatic moment, Leah belted out, "I wish God didn't make me this way".<br /><br />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!<br /><br />10. While Daddy-O was talking in the car the other day, Leah told him "zip it, lock it, put it in your pocket".<br /><br />11. Some of the funny things Kate now says at 21 months are:<br />a) "Oh MAN!!!"<br />b) "Holy cow!!!"<br />c) "Shoot!!!"<br />d) calling me by my first name<br />e) "I have boobers!" (boogers)<br />f) "Who's stinky? Sissy? Daddy?"<br />g) "It tickles" (used anytime she doesn't like something, ie. diaper change)<br /><br />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:<br /><br />"Sweet Ole' Obama......where the skies are so blue"Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com3tag:blogger.com,1999:blog-34315460.post-49854167486943127092010-02-12T20:49:00.004-06:002010-02-12T23:23:59.969-06:00Another One Bites the Dust...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.<div><br /></div><div>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.</div><div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>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!</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com0tag:blogger.com,1999:blog-34315460.post-32421206287415665442010-02-11T22:13:00.004-06:002010-02-12T01:48:27.507-06:00Booger Suckers and Damaged GoodsToday 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.<div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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! </div><div><br /></div><div>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:</div><div><br /></div><div>- Keep her away from anyone who is sick.</div><div>- Avoid Bible class, public playgrounds, childcare until AT LEAST May, if she is well some of the time before then.</div><div>- Absolutely no sharing drinks, food, utensils or anything else that enters her mouth.</div><div>- Save kisses for the top of her head only. No more chubby cheek kisses or open mouth, slobbery kisses. :(</div><div>- Wash hands before interacting with Kate.</div><div>- Remind her to keep things (ie. toys, colors, etc.) out of her mouth.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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!</div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com3tag:blogger.com,1999:blog-34315460.post-17141877724283436532010-02-05T00:49:00.002-06:002010-02-05T01:19:42.144-06:00pH Probe Results<div>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!</div><div><br /></div>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. <div><br /></div><div>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.<div><br /></div><div>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.</div><div><br /></div><div>1. NO fundoplication, which is a pretty involved surgery that would be the next step if reflux was present.</div><div>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.</div><div>3. Hopefully in 12 weeks, we will be 2 daily medications less and 1 specialist less!</div><div><br /></div><div>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!</div><div><br /></div><div>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.</div></div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-48843829347857267932010-01-28T22:29:00.008-06:002010-01-29T00:17:02.106-06:00Pokes, Pinches and ProbesI 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.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCkrQDsKWGKk6Qbmjmzs7tuVBkD-vMZBA34ueo1krSdew_StVNijEVbQtvpF6aPIL-IX9wox27f1pWPqFBBxhgKhE2SUGdZ1YlD3cFozoDfxtgzFNEfqgZR-HfFoS44jJkPeo/s1600-h/SDC10029.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCkrQDsKWGKk6Qbmjmzs7tuVBkD-vMZBA34ueo1krSdew_StVNijEVbQtvpF6aPIL-IX9wox27f1pWPqFBBxhgKhE2SUGdZ1YlD3cFozoDfxtgzFNEfqgZR-HfFoS44jJkPeo/s400/SDC10029.JPG" alt="" id="BLOGGER_PHOTO_ID_5432036836057197826" border="0" /></a><br />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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />#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.<br /><br />#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.<br /><br />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.<br /><br />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!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyp9nhuw4GpKVqcMiDc1W__vv6wwAxfauwO181UBwK4_HjbqGB6oN3HRfS9MWWgp92HW67WloLB69o99XHtVCHg8oteDyLk9cspKLCGe0z_9HDV27FM31jNHI4tCRqv_Ya2To/s1600-h/SDC10033.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyp9nhuw4GpKVqcMiDc1W__vv6wwAxfauwO181UBwK4_HjbqGB6oN3HRfS9MWWgp92HW67WloLB69o99XHtVCHg8oteDyLk9cspKLCGe0z_9HDV27FM31jNHI4tCRqv_Ya2To/s400/SDC10033.JPG" alt="" id="BLOGGER_PHOTO_ID_5432028626663435442" /></a>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".<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgMSbUcpppSD5nAfbtY6m_cjSDpoj6Yh0EZXkxjj8SKvfRJwZDYUU656QZA99ymhhZr2giOdqxi7biVoTm-uiPNtsUt_SF7ctsUJ-WMVIe0kmXPzM5YXq7CKwqtGLUgUYoK80/s1600-h/SDC10043.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgMSbUcpppSD5nAfbtY6m_cjSDpoj6Yh0EZXkxjj8SKvfRJwZDYUU656QZA99ymhhZr2giOdqxi7biVoTm-uiPNtsUt_SF7ctsUJ-WMVIe0kmXPzM5YXq7CKwqtGLUgUYoK80/s400/SDC10043.JPG" alt="" id="BLOGGER_PHOTO_ID_5432015487402880130" border="0" /></a>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.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcSzxeY3vtuJ4yl27BS8m3Plz9ffByQxjWMMxOLD8WkiBBMyjbM4oASmSxHUGpk3P7fXduHfMTK5ULqhSwrIo-Q-kgfp2ZecmRPprOnkGpegTiJccKNSGjPyxib37PjLV5gXg/s1600-h/DSC_0168.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 268px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcSzxeY3vtuJ4yl27BS8m3Plz9ffByQxjWMMxOLD8WkiBBMyjbM4oASmSxHUGpk3P7fXduHfMTK5ULqhSwrIo-Q-kgfp2ZecmRPprOnkGpegTiJccKNSGjPyxib37PjLV5gXg/s400/DSC_0168.JPG" alt="" id="BLOGGER_PHOTO_ID_5432014771870592626" border="0" /></a>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.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHeMvN1JH9Qz-qkgoApk08I6W7HDtUEbEu8Aphqzka23rdE2qVkNd5Z4erUhzYmZ_gjg10GrljdY-NBTI04gs3JjhFzqVK67Gz-KNL-Ud3GsHwKGObJW8MnSni-Hm2UtHuDPw/s1600-h/DSC_0176.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 268px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHeMvN1JH9Qz-qkgoApk08I6W7HDtUEbEu8Aphqzka23rdE2qVkNd5Z4erUhzYmZ_gjg10GrljdY-NBTI04gs3JjhFzqVK67Gz-KNL-Ud3GsHwKGObJW8MnSni-Hm2UtHuDPw/s400/DSC_0176.JPG" alt="" id="BLOGGER_PHOTO_ID_5432014450694440130" border="0" /></a>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".<br /><br />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!<br /><br />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!<br /><br />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!<br /><br />AmenMommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-33813218841525732202010-01-27T21:05:00.003-06:002010-01-27T21:42:28.028-06:00The Big DaySo 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.<br /><br />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!<br /><br />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.<br /><br />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.<br /><br />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<span style="BACKGROUND-COLOR: #ffff00"> colleagues </span>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?<br /><br />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!<br /><br />1. For the procedures to go on as scheduled.<br />2. For guidance for the doctors.<br />3. For the things that are giving Kate trouble to be very apparent and lots of answers.<br />4. For safety.<br />5. For minimal effect on Kate, emotionally and physically.<br />6. For Leah's attitude and behavior.<br />7. For peace for Daddy-O and I.<br />8. For a clear game plan.<br /><br />Thanks!Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com1tag:blogger.com,1999:blog-34315460.post-91824305236422806982010-01-14T14:42:00.007-06:002010-01-15T00:26:38.141-06:00The New Guy and Resting EasyI'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.<div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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? </div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>- 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!</div><div><br /></div><div>- 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. :)</div><div><br /></div><div>- 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. </div><div><br /></div><div>- 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.</div><div><br /></div><div>- 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.</div><div><br /></div><div>- He agrees that we need to continue with the plan to do an EGD scope, pH probe, bronchoscope and cilia biopsy on the 28th.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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."</div><div>Me: "Oh, I'm sorry. They didn't do an echo."</div><div>Nurse: "WHAT? He diagnosed it and DIDN'T do an echo?"</div><div>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."</div><div><br /></div><div>....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.</div><div><br /></div><div>Nurse: "Wait, 'til she is 3 of 4? Does he realize that she is having all of this trouble?"</div><div>Me: "Yeah, I mentioned it, but he didn't think it had anything to do with it"</div><div>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."</div><div>Me: "Well, he is with the same hospital you work with. I don't know"</div><div>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."</div><div>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."</div><div>Nurse: "I'm going to go talk to Dr. H. I'll call you tomorrow and let you know what we decide."</div><div><br /></div><div>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.</div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com7tag:blogger.com,1999:blog-34315460.post-8879666032172200742009-12-31T13:35:00.004-06:002009-12-31T15:06:59.834-06:00New Year's ResolutionAfter 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.<div><br /></div><div>For 2010 I will:</div><div>- Not talk, blog or post to Facebook about Kate's health.</div><div>- Not seek advice, referrals, support or opinions regarding Kate's health.</div><div>- Not research possibilities with her health.</div><div>- Simply answer, "She's great" when asked about Kate. If you catch me answering differently, I owe you a buck.</div><div>- Will take Kate to the doctor when she is sick, but will not interject my opinion, feelings or concerns.</div><div>- Quit seeking the bigger picture and simply put "band-aids" on Kate's symptoms.</div><div>- 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.</div><div>- 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.</div><div>- Quit letting these little things get in the way of my relationships, dreams, goals, plans, spiritual life or personal life.</div><div>- Attempt to regain my sanity and mental health.</div><div><br /></div><div>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!</div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.comtag:blogger.com,1999:blog-34315460.post-14494874927219273952009-12-31T09:03:00.000-06:002010-01-02T22:09:36.363-06:00The Beginning of the EndAt 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.<br /><br />"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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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."<br /><br />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.Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com0tag:blogger.com,1999:blog-34315460.post-34050958070589571882009-12-22T22:28:00.005-06:002009-12-22T22:52:09.592-06:00So What IS Wrong, Anyway?<div>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.<br /></div><div>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.<br />2. Kate had a labial adhesion a couple of times when she was younger. (5 months old)<br />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.<br />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.<br />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)<br />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”.<br />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)<br />8. She has had goopy eyes and pink eye often. (earliest 3 weeks old)<br />9. She has had sinus infections (or at least lots of really nasty, green drainage) since before babies are supposed to have sinuses.<br />10. She has had MANY “viruses” (stomach, respiratory and skin).<br />11. The doctor was fairly certain she had RSV, although the test never showed positive, despite 3 different test dates. (5 ½ months old)<br />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)<br />13. She has been diagnosed with a heart murmur and we are planning to see a cardiologist for further evaluation. (first noticed 18 months)<br />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.<br />15. She had an upper GI when she was 1 month old that showed severe reflux.<br />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.<br />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.<br />18. Her labs show anemia (RDW-CV always high), but the doctor is just now treating this with iron.<br />19. Most doctors feel that Kate, “looks way too good to be so sick”.<br />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.<br />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.<br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCRMN7f7YIXlXx1Xbl-NDs0bAnRRQc4M2CZsoJ-ER8eHX38CM7bBP8TO-o3QkqhEkYMz5Ajd9TVovplNiRJlajwmMuFNzkhqA3kxUtkQXmBu6Yyh_B8ZbMVZB-TiXIQ5S80u8/s1600-h/DSC_0001.JPG"><img id="BLOGGER_PHOTO_ID_5418286283320037042" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 268px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCRMN7f7YIXlXx1Xbl-NDs0bAnRRQc4M2CZsoJ-ER8eHX38CM7bBP8TO-o3QkqhEkYMz5Ajd9TVovplNiRJlajwmMuFNzkhqA3kxUtkQXmBu6Yyh_B8ZbMVZB-TiXIQ5S80u8/s400/DSC_0001.JPG" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh79j0xI_9sAZQ3Lu9HjXFSVb9xmVRRrIxZ0FSzQ2KWAdyA7uohkwvcBn9Mc4LioazlhG9BXq9zH90ajbFxQZRHLp5ocVxKvOOv0D_SrxmjWfEKEBsz4S4gsZuce9ZNciXI9uM/s1600-h/DSC_0002.JPG"><img id="BLOGGER_PHOTO_ID_5418289173671036386" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 268px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh79j0xI_9sAZQ3Lu9HjXFSVb9xmVRRrIxZ0FSzQ2KWAdyA7uohkwvcBn9Mc4LioazlhG9BXq9zH90ajbFxQZRHLp5ocVxKvOOv0D_SrxmjWfEKEBsz4S4gsZuce9ZNciXI9uM/s400/DSC_0002.JPG" border="0" /></a><br /><div><div></div>Here's a little history on Kate.<br /><br /><div>1. Kate was born via c-section at 38 weeks and had no complications before birth.<br />2. She had no problems at birth and was 6 pounds, 15 ounces and 20 inches long.<br />3. Kate was breastfed only until she was 15 months old.<br />4. She started table food by the time she was 6 months old.<br />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.<br />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.).<br />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.</div><div> </div><div>So who really knows what IS wrong with her.</div></div>Mommyhttp://www.blogger.com/profile/05430917938020992742noreply@blogger.com5