Well since I last did an update on here lots has happened. Shayla had her 1 yr biopsy 1 month late to her being sick during winter months everything from her heart was great but the night of her biopsy shay got sick with rhino virus and then we found out that she also got EBV (epstien bar virus) from her heart but her heart is functioning great and the stress test was great. We now have constant blood draws to make sure that the ebv doesn't act up a lot. She has been sick alot it seems like but I know it really isn't in February we took Shayla off her hypertension medication and she is doing great off of it so that is one less med that we have to give we are currently working on getting her off keppra which was the anti-seizure medication that she has been on for a year and a half. Dr. Law our most recent visit wasn't too happy her BNP was up to 200 but it was down from the 400 from when she was sick and he said there was no reason for it and he wants her blood drawn in 2 weeks which was this last Friday just we don't know the results yet tell probably Wednesday because he also wanted a liver test done plus another ebv and normal levels cause her ebv went from like 400 to 1700 that is a huge jump and we don't know why but back to the BNP Dr. Law said that there was no reason for it to be 200 this time because she wasn't sick well guess what that night Shayla started showing us that she was sure enough sick again she had mild fever and a lovely cough so we will see what he thinks when he see her numbers this time. Shayla is starting to feel better from being sick she doesn't seem to be coughing so hard that she is puking anymore and we haven't had any low grade fevers for awhile now so we shall see.
NEW THINGS SHAYLA IS DOING!!!
Shayla says mom all the time and it sounds like she is starting to finally say dad she shakes her head no at us all the time and then last night for the first time she was beating her daddy it was soo cute she doesn't walk or crawl but she rolls all over the floor constantly tangled in her tubes so i get up and down alot through out the day she can't make up her mind if she wants naps still or if she wants to stay awake all day so that is fun at time she is making great progress in her therapies when she isn't sick she still isn't eating anything by mouth but everything is starting to go in the mouth she is even trying to eat all her toys even the ones that are way to big to be put in her mouth also shay can kinda sit up by her self for about a minute but she loves doing it they think it will probably be a couple years before she walks and she may have to have knee surgery because her right knee bows in about 15% and the left 5% and her right leg is about an inch longer then her left so we have to try and correct that as much as we can plus just trying to get her muscle tone up so she can do all those things but she is just soo great she also sits there and growls back and forth with her daddy she is the happiest most content baby that i have ever known I love her so much it is soo hard to believe that she will be 3 in November and December is her 2 year anniversary of her heart. we have been so blessed with her i wouldn't change it for the world. on another note we are moving from idaho to billings, Montana i am just so sick of fighting with stupid doctors here and there is more transplant patients in Montana and jobs and still cheap to live there so we can afford it there without having to loose everything or we would just move to Washington to be close to those doctors.
Well I can't think of anything else to report at this time i will try and get better at updating this blog.
With love the Wilson family
