Megan Update, and it's good...

Well, do we have lots of news to share with you guys. First things first because this is just so amazing, Megan went to the doctor today and she weighs 14 pounds and 15 ounces!!!! Jim and I have decided to give her the extra ounce and make it 15 pounds because of all the hair she has on her head. J Excited doesn’t even begin to explain how we feel. Ecstatic, on cloud 9, but most importantly and at the top of our list Thankful to God because this is all Him! We can’t stop pinching her cute little cheeks that have come back! Regardless of the fact that she has a long way to go to get where she needs to be, it is still amazing progress that we are so excited about! The only slight down side to all of this is with her new found weight, her issue with being Hypotonic has become increasingly worse. What started out with her being hypotonic in just her feet has now spread to her ankles, legs, thighs and hips. Her physical therapist and her doctors have decided that they have waited long enough and Megan will be getting fitted to wear braces on her legs to help with this. At first I wasn’t exactly sure how I felt about it but once her therapist explained they way Megan was trying to stand (she is so hypotonic that she can stand on the top of her feet and on the side of her ankles) you are talking huge amounts of damage and we don’t need any broken bones to go along with any of this. The fact that it has spread is a little more concerning to them as well. Hopefully though with therapy and her new “shoes” (for those of you who know me really well, I did make sure that the braces came in pretty girly colors, namely pink) we can keep from any damage happening. The other thing that they are a little concerned about and only time will tell, is Megan’s weight could possibly cause her to have a harder time holding herself up all together. They have seen babies literally go backwards because they have put weight on too fast. We will see though. Her GI doctor said this morning that they are not going to change anything at all right now because this is working. She should be moving on to a more toddler type of formula but they don’t want it to backfire as some many things have in the past. He also has no plans of taking her off 24 hour drips any time soon. He said since they have tried bolus (feeding every few hours) so many times and she ends up losing weight and her little body just can’t handle it, he does not see any need to try that again any time soon. I was a little saddened by this because nothing would please us more than to have Megan be able to crawl around and play a lot but we agree with him and we don’t want to do anything that would cause Megan any harm to her body and make her lose this amazing weight she has put on. He also said that he did not want to do anything until we get the biopsy results back which should be in May. The medicine that she is on for migraines also seems to be working although her neurologist said it would be 3-4 months before we would see any real results with it. She saw her Neurologist last Thursday and he too is waiting for the biopsy results but he did say that Migraines are a symptom of a mitochondrial disease, which is the main thing they are testing Megan for. I tell you what, this waiting is really awful! Just being honest, 8-12 weeks seems like years, especially when you want the results but are afraid of what they are going to tell you, do you know what I mean? So anyways, we are in a holding pattern. Right now Megan is very sick. She has caught the nasty yuck that has been going around. Unfortunately for her though, he still said that could settle right in to her lungs. He cough is making her choke and gag and the last time this happened is when it got so bad Jim and I almost called 911 in the middle of the night. We don’t want it to get to that point again. Because we never know what is going on inside Megan’s little body her doctors still say they have to be very careful when Megan catches even something as simple as a cold, although I am afraid this is a tad worse. Well, I am sorry that I can’t say much more right now but Megan is sitting here and she keeps coughing so bad that usually means she is about to throw-up so I need to be ready. We love you guys so much and keep praying for Megan, they are working and God is ALWAYS so amazing and wonderful, isn’t He? God Bless and have an absolutely wonderful week! We will keep you posted!

At the doc's office today, playin' it cool!!!   (note: tube is visible, on her belly, next to phone for those who wonder what it looks like. :))





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JR