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

shayla now and then

Shayla august 29th 09 you wouldn't believe that this is the same child from 2 years ago well almost she turns 2 in 2 months it is just so hard to believe how much she has changed and how much she has grown her doctors are so pleased with her we went up to the ICU and got to see one of her nurses and when she saw Shayla she almost cried Shayla is now feeding full time through her g portion of her tube which means that in November we should be able to just get the g button and not have to have the j part Shayla is also only on bipap now as needed and has dropped down to only needing .5 liters O2 during the day and 1 liter at night she is amazing she also now has a fascination with licking things and you but it is rather funny to watch cause she will even just sit there and lick her legs. we miss you all very much but we are still happy to be home we are back in seattle the 12th through the 15th next month.

with love the Wilson family
shayla earlier in august

shayla on the 4th of july with her great grandma

the first day that we were back in idaho since jan of 08
shayla back in hospital for what they call cmv

shayla out of the hospital with us and sleeping with daddy
shayla not too long before we got out of hospital for he first time since dec. 07- march 09
shayla when she finally came off ventalator after transplant for the first time in a very long time
when shayla was finally able to be awake after she was transplanted
2 weeks after heart transplant in 12/09/08

just after she had gotten so sick in november that we were off the transplant list for 1 week
This is after we put her on the transplant list obviously around halloween before she got really sick in november
This is just after she crashed in march of 08 when we figured out we weren't going anywhere any time soon
This one is when we thought we were going to bring her home in march of 08
this is shayla either just after her surgery in january of 08 or just before
This is the shayla that i took to seattle in january of 08

an over due update

Well i know i haven't been very good at keeping this up to date like i should since we have been home and alot has changed Shayla is doing great she is growing into a little girl right before our eyes. she now gibber gabbers alot and the feet are almost always to her mouth she trys to pull her self up into a sitting position. We are finally going to be starting physical therapy and speech when we get back from Seattle next week. We just got done spending the week with my family and mikes family so Shayla got spoiled all around. It is hard to believe that it is coming up on a year since Shayla was transplanted we have our year biopsy in November it is a month early but want to have it done before winter hits. Shayla has started feeding into her stomach and it is going great she even handles her medication in there as well we were afraid that she was going to puke it up but she didn't she is also getting better about not needing her Oxygen as much as she use too when she is on it at night she likes to pull it out to where it is no where near her nose and she doesn't desat without it unless she is in a very deep sleep. Oh yeah we had a hearing test done a week ago and guess what Shayla hears great and everything in her ears nose and throat looks good. we were so happy to hear that considering they did question it for awhile there. we still have to have another eye test because i don't believe that she is blind at all she watches me walk around too much. well nothing much else to report besides we are all doing great. We miss all of you in Seattle but we are still happy to be home.

with love the Wilson family

Little flash back

this picture was taken just a day or two after this event

In about six hours 1 year ago i got a call from the hospital telling me that Shayla was back on the ventilator after being off it for 2 weeks and that she wasn't stabilizing she had, had fevers through out the day and was having a hard time breathing with them but we weren't sure where they were coming from and they had pulled cultures from her several times and nothing grew back from them me and mike headed up to the hospital as soon as we got the call i couldn't breathe at all to go directly to her room so i had sat outside the hospital for a minute and tried to breathe and think semi straight and had a smoke i remember the security guard that was on that night look at me funny and the security guard at the house don as a matter of fact telling me it will be OK. I remember that day like it was yesterday Dr. Beaden came up to us (at this time i had major issues with him) and said "look i know you guys don't like me but we aren't able to get Shayla stable you know her normally she stables right after we put her back on the vent but shes not we are going to have to think about ecmo (life support)" Me and mike wanted to sock him so bad we didn't know what to do we just lost it we went out and called all our family and let them know what was going on and that from the sounds of things they needed to come and see her the only ones that came that was my dad my aunt and my mom that i remember my sister came and went but didn't see her my step mom was there as well for me. Alot of our family just couldn't get flights and if they could they might not have made it in time. I remember them calling us when we were outside and asking me if i wanted to consent over the phone to put her on life support I told them no i will be up there to sign the papers and see her before she went. When we got up there i pretty much layed on top of her telling her that she has to pull through just a little while longer and that she could do it she just has to for me and that i loved her so much and i couldn't loose her and that i would see her after she came back. then her dad said his good byes and that he loved her. they took her back and about and hour and a half later Dr. Beaden came out with a smile on his face and all i could think was you erragent ass whole but he came in sat down and told us that she stabled out that they got her on the table sliced her leg to put in the arterial line and that she purked up i was soo happy and thanked him for what he had done i stayed the night that night and the next day during rounds Shayla woke up and started touching my face for the first time ever since she had been in the hospital and looked at me with eyes telling me that everything was OK i just started crying during rounds but to look at her now with her new heart and all you would never think that any of that had ever happened she is so happy and playful and gibber jabbering and laughing most of the time i think she is just mocking us lol. I know that this is a long and sad story but it is and always will be a part of our life.

This one was taken just a couple of days ago

UpDate

Shayla is doing soo good she playing alot more and is making lots of noise all the time now it is great. we get to move this weekend to my great granddads property out in Eden which will be nice it is about an acre in a half so lots of space and nice and quiet and we will be out of my moms place and in our own even though it is kinds small it will work for the three of us just fine for now. She is getting better with the O2 she is able to have it out more and kinda keep her O2 up on her own she still drops but most of time she can get it back up on her own. She is so cute and is getting so big and smart i might add she knows how to get attention very much so. once i get some pictures i will post them i know i keep saying that but i will as soon as i have them.

with love the Wilson family

We are home once again

Her gj went great she they started feeding through it Friday and we left Saturday. We will go back in the next 4-6 months to have it replaced for one that is more flush with the skin so hopefully we can just do it with her heart cath in December. she is doing so good she is just progressing so fast it is weird. Dr law keeps telling me how amazed he is with her and where she is right now no one ever thought that she would be as far as she is. once i get some pictures i will post them on here.


with love the Wilson family

her GJ tube

She got her GJ tube today it went great she is doing really good with it so far for the most part she is really fussy this afternoon but i don't blame her because people wont stop messing with her at all. they say that we should be out of here Saturday and home so we will see how that one goes as long as we are able to start putting feeds through the tube tomorrow everything should be fine so i will know more then. that's really all for now not much else to report with her besides that and she is almost off her ativan for the first time in a year in and a half.


with love the Wilson family

a little update

Shayla is doing great she has learned how to get herself out of her wedge so we now have to use the buckles that they put on them to keep her in she has also learned how to lift her bottom up of the ground and move around the floor some she is also making noises now. We fly back to seattle again next week to have a gj tube placed on the 11th we get in on the 10th and we check her into the hospital. Today she did run a fever so called the doctors and they said that alot of their kids have been running fevers and to just give her tylonal and ride it out unless she starts looking punky and she looks great still the only thing is coughing some but that is it. It has been great being home i am more relaxed then i ever was in seattle. Not much else is going on here we miss everyone there.

With love the Wilson family

We are home!!!!

We got home early this morning 5am mountain time. Shayla did great on the trip here we did have to stop alot to get her out of car seat so that she didn't suffer too much but she has enjoyed being home for the first time in a very long time and in her own room and bed. It is really weird being home though and not at the Ronald McDonald house. We already miss everyone there and can't wait to see everyone we have to come back to Seattle on the 27th of this month and June 10th and we should hopefully get a gj tube at that time cause they finally agreed that it has been enough with her pulling out her feeding tube cause she did it the nite before we left too. she is doing so good and they are so happy with her she is now here on 1 liter of O2 and in Seattle it is only .5 liters. not much else to report except that she is learning how to laugh and it is so cute once i take some more pictures i will post them. We do have to drive to Boise next week to see our doctor there.

With love the Wilson family

Good news and some bad

Today we got told that we get to leave Wednesday but we do have to go see our cardiologist in Boise on Friday this is all saying that she does good over the weekend. Also even though she wasn't getting full fluids over the last week she did manage to keep her electrolytes in tack but she lost weight which isn't good so we moved her tube today back to an ND tube so that she can get her fluids and gain weight like she is suppose to. The other bad news is that she is going through some major withdraws today so we had to go back up on her morphine because it was a huge jump down even though we went down on it Monday and it is now Friday but the ativan one wasn't that big so we are no longer to follow the wein schedule but we are to only go down by .1mg on each every week so that we have a smooth transition home and that the doctors back home don't have to try and trouble shoot what is going on when they don't really know her like the ones here. We have the last visit to doctors here today at least for 2weeks we do still have the sleep study tomorrow but that is it until we go home thank god i do still have to pick up one last prescription there but that is it. My husbands mom is going to fly in hopefully and drive back with me so i don't have to drive alone thank god. I hate driving over the blue mountains i just get to nervous doing it and if it was just the two of us i would just completely freak out let alone driving 12hrs alone so we will be home in time to put her on her bipap and to bed and relax and go to bed myself lol. once again i know i say it all the time thank you everyone for everything especially my dads work down in ocean park they have aloud my dad to put up containers to raise money for us to help us out while we were here also since we are still in need of our own place some friends of his are going to be putting a bake sale thing together there on the beach to help raise money for us to get our own place If any of them read this thank you so much it means alot for everything.


With love the Wilson family

It is even sooner

Well Friday before the transplant team left for the day Jason called me and told me that they were getting things set up for us to fly back here on the 22ND for an appt. with them and i asked him what sense did that make if i left on the 20Th to turn around and come back on the 22ND and he told me that we will get to go home even sooner we have our one appt with them on Friday morning and then a sleep study on Saturday so hopefully i should be able to take off a week from today. This all is so weird we spent the last almost 2 years of our life here at this hospital and we finally get to take our baby home in some ways i love it because i have gotten to see my dad alot more then i would have and my aunt and i will miss that alot. along with alot of the friends that we have made here with out everyones support that they gave me when my husband wasn't here and when he was here i don't think that we would have gotten through it. I will miss everyone and will never forget it. Well for the last week almost Shayla has been being fed in her belly for the first time in over a year and she has done great with it so far i can't believe how well she is handling it even with all her meds that she gets. Not much else to report today.

With love the Wilson Family

It's about time

We finally get to go home on May 20Th we are leaving for Idaho it is going to be a long drive ahead of us about 10-12 hrs but we will be home finally after a year and a half i can't wait. They are getting everything set up for us back home we have to most likely still go to Boise once a week to get her blood drawn and then our home health nurse and doctors in twin and come here once a month and pt/OT and her doctor in Boise once a month. it is still going to be really busy even though we are home but at least we are home and have more control over everything and our own space well at least once we get out own house we will. Thank you everyone for everything i don't think i could have made it the last year if i didn't have the support i do have.


with love the Wilson family

We are out of the hospital

So we got out Tuesday so far so good it has been tough doing this alone i get to take a couple of breathers a day but that is it. Shayla is doing really good we have had a couple hard nites but she is also starting to try and talk but it is so funny cause it almost sounds like she is gagging on something even though she isn't but she'll keep trying which is good. not much else to report they are rechecking the cmv we will have that test Monday. We go into clinic on Wednesday and oh yeah we get to go home in a month for the first time in over a year it is great i can't wait to go home it sounds so good and relaxing cause the first couple of days after we get there dad gets to do everything i need a small vacation lol one could only wish. Thank you everyone for everything.

With love the Wilson family

Clinic with the eye doctor

Today we went to clinic to have her eyes looked at and to make sure she didn't have CMV in them which she doesn't. They of course told us what we already knew about her left eye that she is blind in it but we also found out that she is pretty much blind in her right as well she can see blur close to her but that is it and that she will have to read by brail. I have no clue where to start to try and teach her what she needs to know. i am kinda scared just because i don't know or even where to look or who can help me find this. She is still my happy little baby and is doing great so we shall see how it ends up. Thank you for your continuing support.

With love the Wilson family