[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by Cynthia Woodmansee on 11/7/2006, 9:03 am, in reply to "Re: baby with mosaic trisomy 22" --Previous Message--
66.74.80.8
Thank you so much for your response. Our little guy is being adopted by very close family friends of ours. Actually the wife is like a daughter to me. She has been helping around my house with my foster babies since she was fifteen years old! Her and her husband now have a 2 1/2 year old daughter and are adopting the baby I have. It was wonderful to hear that your daughter is thriving! I wonder if you could tell me if she is walking, talking and potty trained. It sounds as if she is doing things that are age-appropriate. If you don't mind me asking, what kind of physical features does she have that are typical in Trisomy 22? Our little baby has a very short round nose, he is very tiny. He's almost 7 months and just weighs a little over 14 pounds. He is also very short. He has one kidney, a mild ASD, hearing loss which requires hearing aids, and the left side of his body is a bit bigger than the right. He is having surgery this week to locate his r testicle (ouch) and he does have a slight malformation of his penis. They said it could be repaired and it doesn't affect his ability to pee. He has the best personality ever and people are so drawn to him. He stares at people until they look at him, then he gives the biggest smile. He is receiving early start services as well. We are blessed to be taking care of him and feel God has answered our prayers for his forever family. He will still be a big part of our family after the adoption and for that we are so thankful. Thanks for you response and I'll look forward to hearing about your daughter. God bless you, and give her a hug from me. Cindy
: 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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