
Posted by Liz I have a 5 year old daughter. She is the youngest of 4. THe pregnancy was complacated due to preterm labor at 27 weeks, ultrasound showed an echogenicfoci and we had an amnio. I was told that all looked well. She saw a cardiologist at 2 weeks, we were told she had slight murmurs but not to worry about them. At 2 years she had double eye muscle surgery. We again said oh not a big deal since my brother was cross eyed. Now her eyes are again turning. The reason I took her to the ENT was to prove to everyone that her voice was normal and she would grow out of it. WRONG. I was told she had a bifed uvula and sent for testing. That showed a submucous cleft palate and today we spent the better part of the day in the Cranifacial Center. Here I found out that she has a substanial amount of fluid in the right ear and needs tubes. She has never showed signs of ear infection. I find out she is just barely in the 10% on height, at 5 she wears a size 3T. And now the genetic lady wants to have her evaluated for the 22q deletion. This will be done the end of November. She also goes back to see the surgeon that day to discuss the surgery for the cleft. Ent says he can wait til then to place the tubes but has put her on Singular til then. I guess what I am trying to find out if this could be connected to the 22 issue and what to ask and find out more about when I see the genetic center. Any info, suggestions, thoughts are so welcome right now. Thank you
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on 10/28/2005, 9:49 pm
65.25.17.231
Hi. I hope to not make this to long winded here so please forgive me if I do. I am looking to find some kind of answers that I can understand, not all this mumbo jumbo.
Liz
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