Make a Wish!

So Lilia was approved for a wish through make a wish! so excited! in a couple weeks they will be coming over to fill out more forms and see what wish she wants. i am betting she will pick Disney World. will keep you updated!

a new medication for lilia

she still occasionally tries to sufficate sebastian. anyways shes watched very carefully and stopped right away. we had a team meeting in t.o last week. we had transplant social (tx) worker, tx pyscologist, tx. pyscatrist, and her school principal and the school for the deaf pyscologist present. we had a long chat. and decided to try and medicate her for her aggressions. her ped is starting her on respirdal today. a low dose to see if it helps (this was okayed by the tx team as well). its not only this new behavious problem but she has issues with school too. last year she gave a boy a black eye, pulled hair...was very agressive. on the bus shes pretty hard to manage too (surprised she hasnt been kicked off yet). we have questions as to wether she is bipolar...but the shrink said its too early to tell. especially with her being developementally delayed, and behind in both speech and asl. she also mentioned that lilia might be hearing voices, telling her to do things. but again becuase of the lack of communication its hard to tell. either way we are hoping this works. it was a very hard choice to medicate her for this, but we need to do something she has so many issues and struggles so much.

ct results and other news....

shes doing fine right now.....but she had a ct scan the other week and it showed her left lung is in bad shape. the bottom of it is collapsed and the upper part is so full of mucus that no air is getthing through. waiting to hear back from respirtory and ent...but they are discusing on wether to do nothing sat this point...or remove the lung. its a great source of infection (she was hsopiailized in june with a bad pnemonia and she gets pnemonia all the time) also, we're not telling the kids this, but during heart transpant clinic last week we were told that lilia most likly will not qualify for a 2nd heart transplant. typically a heart lasts like 10-15 years ish... and she is almost 8 years old. our hope is that its lasts a very long time and that by the time she needs a 2nd one things will have changed and she will be a canadiate. but it was still devastating to hear. waiting on an MRI for her, and still working on geting a dx about her behavioural issues/ we know for sure its not autism...but probably adhd and maybe brain damage or other learning dissabilites or mental health issues. its a long road

July update...

Still waiting on the team to get back to us with the date for her MRI....i am very inpatiently waiting though! poor lilia has had a bit of a rough summer, the end of june she was hospitlized for a pretty bad pnemonia. lukily becuase she didnt need oxygen we were able to go home the next day on iv antibiotics and for 3 days before she lost it, a nurse came and gave those to her. then she went on oral antibiotics for 10 days,...and all was good. she had a ct scan of her lungs, and chest clinic last week. nothing big to report there yet, waiting for them to call us with results of the ct scan. chest said she was fine although she had such a bad sore throat she was always in tears. got home and took her to the ER and she had a bad case of strep throat. so more antibiotics. shes still on the meds, but at least now she is able to eat and drink again! i was worried she was going to be dehydrated. she has tranplsnt clinic august 8th as well as an echo....then nove 22 she will have her big procudure done. it was suppose to be in july but because of the pnemonia we had to rebook it.

Transplant psycologist..

so last week we went to t.o to see the transplant pyscogolist. we went over the report from her school, gave premission to talk to her teachers, etc...we told Dr.gold about how we were wondering if she had ADHD, and also about brain damage. well as it turns out lilia had some testing done at 2 weeks and up untill shortly after the transplant. they suspected that she had a grade 1 brain bleed. turns out it could never be confirmed or denied. now my sources tell me that if it was bad they never would of put her on ECMO becuase of the blood thinners...so i feel a bit better. but i do wish they would of mentioned this some time in the last 7 years. especially since were they suspect the bleed is in the language and memory part of the brain. it would explian a lot! we are hoping her cardiolgist will ok an MRI to check this and other areas. see if this should even be a concern or not. if not we will look into other things. she defeintly agree with us that despite being deaf and all the medcial stuff she went throguh she is still behind kids who have similar issues. i just want to get her help, i hate seeing her act out and struggle.

Wow,,,an update

wow i really have not touched her blog in sooo long. well for those who were worried about her liver...that resolved itself looooong time ago lol. we dont know why the levels were wonky, but they fixed themselves. welll my princess Lilia is now 7 years old...can you believe that? she turned 7 in December, we had a rainbow birthday party for the family and for the first time ever she had a class party. They play glow in the dark minigolf...which was interesting lol. health wise shes doing ok...shes had pnemonia off and on..some years were better then others. the biggest news is her feeding tube was removed!!! yay, we hadnt used it in a year so we just yanked that sucker. shes still not eating much REAL food but she does eat the formula that was going through the tube orally. so no point in having the tube. it blew her mind when we removed it. However she is just getting over pnemonia again, and even after the infection was gone she was pale and had lost 2 lbs in about 2 weeks. not good. so her ped told us to up her formula an extra box, so she takes 5 right now instead of 4. 2 of them at school. if shes still pale and tired when we go back next week they will do blood work to check on things. but it just might be becuase of the weight loss. so fingers crossed shes gained enough weight to make the docs happy when we go back. School wise, she struggles. A LOT. we had her talk to a pyschologist that specializes in deaf children (he himself is deaf) and after a ton of work...he was unable to dx her. he is pretty sure she is ADHD, since her attention span is like 2 seconds long. (and other reasons) and her memory sucks. anyways we have a lengthly reposrt, and basically he thinks she might have other issues but wasnt quite sure what. well you know Lilia....shes always been unique LOL. the transplant pyscholgist has a copy of the report and hopefully we will have an appointmnet with her soon to discuss what to do next. her hearing, well we were finally able to get her to do the test properly!!! and it actually showed her hearing is worse then what we thought, its a moderate loss in the low ranges and a perfound loss in the high ranges. i think it was like 105 dp loss. we were told she would probably qualify for a cochelar implant but decided against that. (save that for another post on its own) so we got her new aids and turned the volume up. shes is doing a bit better. speech is still slow though. her asl is amazing, but even that is behind according to her teachers. anyways tomorrow she gets new glasses, and i will post a pic then! oh the new template is green for organ donation and the butterfly quote because i believe the transplant was like her turning into the butterfly. so now butterflies are kinda my think. the pic of the ribbon butterfly, i want for a tattoo! anyways good night everyone. i swear i will reallllllly try tp keep you updated on our amazing miracle baby.

Liver issues

So now we might be dealing with some sort of liver issue. Apparently her enzymes are high (i think thats right) and it was seen to be normal for how sick she was the last couple weeks but since shes been better they have gotten worse. Which doesn't make a lot of sense to me. and has her doctor concerned. So next week (tues) we have to go for MORE blood work (poor kid, todays blood work was a friggen nightmare to get) to see whats up.

untill then we are to stop her high cal formula and give her an extra can of the normal stuff in a day to try and get her weight back up (she hasnt gained a thing back since she's been home).

apparently the liver issue is also why her poops have been white.

really if its not one thing with her its another.