Well Shay is 3 yrs old

Shayla turned 3 on the 5th she is doing so good it is hard to believe she has come so far from where she was when we brought her home almost 2yrs ago she now sits up without having to have her hands on the floor she almost has full control of her head when she is sitting she is making more sounds letter sounds she is just doing really good all the way around and in February we will be having her 2yr biopsy the only reason it isn't on her anniversary is because of the fact of how our appts have ended up we are going down this month and then again in February. I am currently working which is kinda hard not being with her 24/7 but it is good for both of us so that next year when she goes to school there wont be as much separation anxiety for either of us. we will be having family pictures done before Christmas and i will post them i hope everyone enjoys their holidays and has safe ones.



with love the wilson family

Long over do update

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

Proggress

We had family pictures done just before christmas they turned out great especially with shayla smiling so much. She also now says mom now just need her to say dad but that is going to take time. we are off to seattle in a little over a week and she is going to have her biopsy on the 12th of january so we will see how that goes we havent had any problems so it should go good and be in and out of there. we hope everyone one of our heart friends is doing good and is as happy as we are with shay. her pt ot are going good do to the weather we haven't gone to speech because I don't wanna take her out in it and chance her getting sick or us getting stuck on the side of the road with her.


with love the Wilson family