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.

Drug levels still not great

So Lilia was poked on monday and we got word that her rapamune (anti rejection med) was still not great. I was wrong ebfore her level is actually suppose to be between 6-8 and it was at 19.6 on monday. so we were told to hold off the meds for 2 days then take her back for blood work.Then start giving her the med again and in 5 days to another med level.

well today was BRUTUAL for being poked. She would have none of that at all. She fought really hard for somone so tiny. but Carol (who is awesome) managed to still only do it in 1 poke. And after Lilia got a little stuffed bunny, which cheered her up right away.

anyways so i am NOT looking forward to the poke on tuesday.

Lilia's Home!!

So in the excitment of her getting released last week i totally forgot to update her blog. So here goes.

She was released from the hospital last thursday.
so they told us at 9 am we could go as soon as they got the drug level back (we had issues with it, she was poked every day we were there for drug levels) then we found out we wouldnt know till 2-3 pm what the levels were! we had to get rora from school, and was afraid they would discharge us then with no car to go home....so we told them at 2:30 we were leaving anyways. and we did...just walked out. there was NO reason to keep us for so many hours based on soemthing we usually get done as an out patient anyways. we were pissed. i called t.o myself and got them to get the results and tell us what to do med wise (which is all they docs were going to do anyways). poor girl has to be poked again on monday....but at least as an out patient now.

so finally the doc finds out we left and he actually called us at home to apologize for making us wait so long. SO now I am not so pissed about the whole thing.

Drug Levels

So I forgot to mention this. When Lilia was in the ER they did a drug level on one of her anti rejection meds. Turns out that it was 100!!! To give you an idea of how high that is, its suppose to be between 8-10. So for the last few days they have had to hold the med and wait for her drug levels to come down. which means being poked every day. Since its policy to no longer take blood from the IV, she gets finger poked every morning. Shes not happy about that at all.

it probabaly happened becuase she she went so long without food in her stomach, was probabaly a bit dehydrated, etc.... lukily they caught it though.