Sarah - posted on 01/29/2009 ( 11 moms have responded )
My cutie 13 month old daughter was born with a variety of congenital defects. I am beginning to accept the fact that she may never have a proper diagnosis, but sometimes I feel compelled to find the answer. And I would like to know what hte future may hold for her. Her doctors and specialists have not been able to come up with any sort of conclusion. I thought maybe someone would read this and be able to help or offer their experience. She was in the NICU for her first month of life at which time both a standard genetics test and a mircoarray analysis were completed. Both came back normal! She has the following defects:
~ Larygomalacia - difficultly breathing and swallowing.
~ ASD, VSD and Left SVC - heart defects.
~ Bilateral Hearing Loss.
~ Anterior Polar Cataract.
~ Umbilical Hernia.
~ High Palate and "Tounge Tied" - since had surgery to correct.
~ No pinkie nails on toes or hands. Pinkie fingers are a bit short.
~ Acid Reflux.
Developmentally she is behind children of her age. Works with a PT and OT, but still exhibits:
~ Low muscle tone.
~ Tightness thru shoulders.
~ Difficulty reaching, will not reach upward or outward.
~ Does not crawl, only 'army' crawls.
~ Cannot go from sitting to crawling.
~ Can stand, only when holding onto a couch or chair.
~ Does not talk, "growls" and will say "mamamamama" and da-da-da -da (not dada, but the da like the d in dog sound).
~ Does not like to be touch by other children. Kinda antisocial.
Just wanted to post this and see if anyone is in the same position!
Thanks for reading! Namaste ~ Sarah