[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by Gloria on 11/6/2006, 9:44 pm, in reply to "baby with mosaic trisomy 22"
209.6.178.203
Hi,
It's been a while since you posted your message, so I don't know if you did adopt the baby in your care. I can tell you about my experience and you can feel free to ask me questions if you would like to.
Our daughter was diagnosed with mosaic trisomy 22 when she was three years old. We knew something was going on but the diagnosis did not show in blood tests and only was possible to show in a skin sample. Her features are mild and she is thriving. I believe the first three years were the most difficult as she had a few hospitalizations due to pneumonia (the left lung artery stenosis probably made her vulnerable). She also had a hole in her heart repaired by catheter(a moderate VSD ). She also had reflux in her urether for which she took preventive antibiotics for over a year. She had Early Intervention services, which were incredibly helpful. Now most of her conditions have resolved and she only sees a few medical specialists once a year. She is four and a half now, attends preschool and she is a lively and creative little girl. She is even learning two languages. Even though I don't know what the future will bring for her and what difficulties she may face, there is a lot of hope for her too.
Good luck and take care,
Gloria
--Previous Message--
: Hi, I have a foster baby who has been
: diagnosed with mosaic trisomy 22. He
: was seen at UCLA-Los Angeles yesterday
: and apparently 11 of 20 chromosones
: tested were positive. My husband and I
: are thinking about adopting him, since
: there is no interest from any other
: family and his family put him up for
: adoption when he was born. We know so
: little of this disorder and any
: comments from other families would be
: great. Thanks, Cindy
:
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