Im soo worried and I dont know what to do...

Crystal - posted on 02/08/2011 ( 1 mom has responded )

I have a 4 1/2 year old daughter Nevaeh whom has severe developmental delays and no one can figure out why or whats wrong. Her brain is normal we have found through testing, we have done numerous tests she has had so much bloodwork and has been poked n prodded by numerous doctors at the childrens hospital of pittsburgh pa. She has been in pt, ot, and st for the last 2 years, she now goes to a special school for 3 hours a day 4 days a week. She has made very very slow progress in her short lil life. She can now sit up on her own if u sit her up she cant pull herself up (tho she does have a bit of a curved spine), shes able to drink from a sippy cup but has to be laying down because she cannot lift to cuppy high enough when sittin up to get any, she still requires to be burped, i have to purree her food cuz she doesnt chew and i feed her from a baby spoon, she doesnt talk at all besides baby babble, she has never bared weight on her legs even if she is held up she bends her knees, she doesnt crawl but she does roll to get what she wants she will roll all over the living room and she will hold her upper body up with her hands on the floor but she wont pull her lower body up with her knees, she is still pretty small id say the size of a small two year old. She uses her hands n arms well, she can grab her binky n flip it around n put it in her mouth she can grab her toys n shake em n transfer them from hand to hand. She seems to be a pretty happy baby gurl, she smiles and laughs and plays with her rattles n links n crinkle books. If youd see her and didnt know her age ud think she was just a little behind, but shes going to be 5 years old in September and im really getting scared. Right now shes still small enough we get her around in a stroller, im desperately pushing back the idea of her needing a wheelchair soon, i dont want it to come to that, i desperately want her to be able to walk even if with assistace. I feeel like if we knew what was wrong maybe we could make a better plan of what to do to give her the best chances of walking and talking. Nevaeh was also born with a portion of her eylid not developed, so her right eye is always open, she can squeeze it shut enough to blink if she wants which she does now n then, but its open all the time, i think she is beautiful no matter what, and thank god it is purely cosmetic meaning her eyesight is just fine. But people are so cruel, i have been known to get pretty ignorant with people who stare and or say rude things aloud. its amazing how sum adults r worse than children, pathetic. But she sees a eye surgeon and we planned on when she got around the age of 2 or 3 wed put her under and fix it, they said once she was that age her eyelid would be more strechable n shed have enough that we could pull the two sides together and stich them together ( cause she does have the sides, its just a portion in the middle thats not there). And also waiting till she was 2-3 made anestesia much safer, they wont put a baby down unless they have to cuz babies have a harder time coming out of it. Anyway, now though we dont know what to do about her eye til we know whats going on with everything else cuz im to scared about puttin her under. Her eye doesnt bother her since she was born like that, i jusat hate that kids and adults make fun of her. I really think she does understand alot more than everyone thinks. Though she cant speak she seems to understand alot i say, so i do wonder if she understands when ppl stare at her or say rude things. And i really wonder how she feels about everything, considering she cant play with her siblings like they play, she lays or sits n plays with her toys n watches them, and i wonder what shes thinking, is she sad :-( , the thought of that breaks my heart and i just want to kno what is wrong so i can do my best to fix it like mommy is supposed to. I have read alot of the posts on here and have found a few ideas to check into. I have searched n searched on the internet trying to find what disorder or whatever this could be. But if any of u can give me any suggestions that would be wonderful! I am so glad i found this place because i (and my husband) feel very alone, whatever this is must not be very common , ive never seen nething like it, its nice to kno there r other mothers out there who r going through similar things and kno how i feel. Thank u