New lurker here with an intro...

Avatar for bahama_mama_llama
iVillage Member
Registered: 04-22-2003
New lurker here with an intro...
1
Tue, 02-17-2004 - 12:10am
Hey...I hope this is the right board for discussing my girl. I thought I noticed a wide range of disabilities here.

My name is Stefanie and I have the MOST beautiful babby in the world, Alexandra (Alex). She is almost 17 months old and has so many special needs so I guess I'll start from the top & work my way down. She has 2 chromosomal abnormalities -5p (cri du chat) & 11q+. She has agenesis of the corpus collosum (the network of fibers that connects the right & left sides of the brain) is completely missing. She has cerebrial atrophy (less developed brain)...from this she has only had one seizure so far & we hope to keep it that way :-) She has moderate hearing loss in both ears. She has a moderate heart issue. She has Grade II kidney reflux and a malformed right hip. She has severe hypotonia so she has yet to master any head control let alone sit up or walk. I have my difficult days but when she starts laughing or smiling I know she is so worth it. We have no idea what the future holds for Alex but DH & I (like I'm sure the rest of you) will make sure she's happy as much as possible. And believe me any advise is welcomed on how you have helped with your children :-) Thanks for listening.


Stefanie & Alex

Stefanie

 

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iVillage Member
Registered: 03-19-2003
Tue, 02-17-2004 - 8:43am

Hi Stephanie and Alex...we welcome you to the board and yes, you'll find support here.