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.