[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by Kristine
on 2/28/2009, 8:23 pm, in reply to "partial trisomy-looking for information"
70.185.98.220
Hi!
My 3 year old daughter has a partial duplication of chromosome 22 also. She has a cleft palate, along with other ear, nose, and throat problems. When she was born we tried all kinds of bottles, all kinds of formulas, all kinds of thickeners... It about made me crazy and still she wouldn't gain weight. But I didn't want her to get a G-tube (gastric tube, or feeding tube). I think I just was trying to make her as normal as possible; I was still sort of in denial.
Finally when she was 3 months old I gave in and she got her G-tube. It's really been the best for her. She was finally able to gain weight and sleep better and develop. She still has it, but she goes to occupational therapy and speech therapy where they help her work on her oral feeding skills. She's getting better at it and loves the taste of things. She's just not so good at the swallowing part. 
So, anyway-- long story, but basically don't fight getting a G-tube. In my experience (and I'm also a pediatric ICU nurse) G-tubes help. It's a very simple surgery. And when your child doesn't need it anymore, it's very easy to remove.
I'd love to answer any more questions you might have.
Kristine Slimak
cindal@rocketmail.com
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