Another long over due update

Well little miss shayla will be 5 next month on the 5th. It is hard to believe that she will be that old already. Some days it feels like we just barely brought her home from the hospital. Shayla still isn't walking or talking but she loves to stand and scoot around on her knees she has gotten so big these last few months. We go back to seattle in november as well she will be having another biopsy done the last 2 have shown rejection so maybe the third time is a charm plus hopefully these steroids did it this time. Shay is loving pre-school again this year they are all so wonderful with her you couldn't ask for a better team of people to take care of our precious girl.  This last week a little girl that got her heart transplant a month before shay in 2008 fought for her life unfortunately she lost her battle is now an angel in the sky with all the others that we have known and lost she will always be remembered and will be forever loved. We always know that there is a chance that this could happen to our children but you never want it to happen to any of them. It has been hard dealing with this and I know her parents loved her very very much and will miss her more than anything I am not very good with words and never have been so there is so much i wanna say and i don't know how to say it. I love all you heart babies and even if I don't talk to all of you often I always think of you and always will.


I will update more after her biopsy next month.


With love The Wilson Family

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

we have finally hit 1 yr since transplant

this is shayla after her chest was closed


well technically her 1 yr is tomorrow so i am a day early but we have hit it with no issues the only reasons we have ended up in the hospital is 1 cmv back in march then in june for her gj tube placement and then in september because she got sick but none of it has been the heart directly she hasnt had any signs of rejection since transplant she has been doing awsome she is progressing everyday something new she likes to sit up for with help still of course she babbles alot and is just all around happy i wouldnt trade her for anything she is my special baby i wouldnt know what to do without her she makes me so happy everyday i still remember when we got the call that they got a heart for her i didnt know what to do it was 6 in the morning on the 8th of december and Jason our favorite transplant cordinator called and told us we started calling everyone we knew and telling them that we finally got one after 6 months of waiting maybe a little over but hey we had gone through so much with her and we were starting to think that maybe this is it that it wasnt going to happen when it did we went over to the hospital waiting and waiting tell it came in and it ended up not happening tell 1:30 am on december 9th that was the longest wait ever she got out of surgery about 7:30 in the morning on the 9th anddr cohan had come out and told us that the heart was beating and looked good even though her chest wasnt closed until december 23rd it has been the best and worst year but it happens and we have her and she is the best christmas present we could ever ask for we thank all of our friends and family that stood by us through those hard times and helped us keep our spirits up when things were rough. since it has been a year i think it is time for our family to write a letter to our donor family and thank them for the best gift of all i know they lost the one they love as well but maybe it will help knowing the gift that they gave to us this picture is shayla back in august september she now doesnt have the o2 during the day.

We love you all we love you too especially shayla happy heart birthday

ok its been a long time since i posted last

Well since i have posted last there has been alot of ups and downs but the ups have been great Shayla is really starting to babble alot now along with all of her other lovely noises that started about a month ago also a month ago she got sick and so did i right after we got back from our Seattle visit i got better within two weeks but she never did and then she started running fevers high fevers again but no seizures thank god took her to er that is close to where we live and they are just dummies so we went to Boise and she had a collapsed lung and she had the flu and dr law is convinced that she had the swine flu but he still wants her vaccinated against it. we only spent 4 days in hospital after that issue the day before we were released Shayla was off OXYGEN ALL DAY not just part and since then she really doesn't need it all to often there are still days here in Idaho that she does but not very much it is such a huge change considering we left the hospital with her need 2liters of oxygen she is still on bipap as well but the oxygen she need through there was 6liters and is now 3liters she is doing so great she just isn't the same baby anymore.
Also we have started pt, ot and speech and there is a school here that is going to be starting to work with her too when ever they call back but they therapy part speech believes we can get her to eat by mouth but we have to get her to stop putting her tongue up in the back of her mouth and then pt and ot believes we will get her sitting and walking and crawling that this is just all going to take some time but at least we have a plan and they have hope that this will happen and i believe that it will to.
On an even better note the walls of Shayla's donor heart are finally thinning out which is a really good thing except Dr kemna threatened to take Shayla's oximeter monitor away from me because Shayla's heart is doing so well that when she sleeps her heart rate is only in the 50s sometimes at least that is when she is in a sound sleep but of course i am still not use to it so i call and tell the transplant team about it. But other then me freaking sometimes with it she is doing so well she can roll onto her belly now just not off of it and she hates being on it (one of just a few things for ot/pt). Shayla also finally got a top tooth in so she can definitely bite now leaving indents on mommies fingers let me tell ya it hurts she also has this obsession with scratching doesn't matter where if its your eye you cheek or anything she can get her hands on. her other famous thing is when i put her in bed with me to take a nap or something if my back is facing her she pulls my hair and kicks me now and it is no better facing her cause than she just goes for everything. i am teaching her to hug though and trying to get her to learn to clap her hands and play with toys we did manage to find one toy that she absolutely loves it is a bumble bee by v-tech. This morning we had to get up to see docs and speech and i don't remember what i was doing or telling her but i swear i heard her tell me no and not just the shaking of the head no but the word lol she just cracks me up.

Well November 13Th is Shayla's biopsy of her heart for her 1yr it is a month early but i don't wanna chance not being able to get there in December because usually after Halloween it starts to get bad here sometimes not but i don't wanna take any chance also at that same time she will be getting a button hopefully just the g button not a gj also she will be having a hearing test and she will also be having another sleep study and she will also be having a eeg to see if we can get her off the keppra she has been on for seizures since just after her first birthday. the other good part about this is that after her biopsy we don't go back to Seattle tell January yippee!!!! i cant wait i am so tired of traveling i think it is high time to start making them further apart especially with how well she is doing. we still have the battles with keeping the blood levels straight like right now but that is partially do to the er here where we live don't wanna get into that because it makes me angry. well i don't think that there is much more to report right now but hopefully soon.


with love the wilson family

not so good news

well on Tuesday after just getting back from Seattle Saturday me and Shayla ended up sick basically just with a cold and then Wednesday i got an unexpected call from the transplant team in Seattle telling me that Shayla's cmv test came back that she has 1,000 copies which is their cut off point and that we needed to have blood drawn again today to see where it is at well we wont know the results tell next week but if it does anything like it did last time she got it in the end of march first part of April we will be back in Seattle within the next couple of weeks and she will be admitted to the hospital and put on iv antibiotics. if we get lucky though we will be able to use the oral antibiotic and pray that it works. so far she is not showing any of the signs that she did last time to which we ended up in the hospital we haven't had any puking except one night and that was just a little bit because she coughed really hard so we are going to keep our fingers crossed that this will just go away this time without a hospital stay. on a good note Shayla has been fed through her stomach only for a week now and has been doing great with it even on her bi pap. once we know more on the cmv i will post and let everyone know what is going on. please keep your fingers crossed that we don't end up in Seattle before we are scheduled for just normal check ups.

with love the Wilson family