[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by Gloria on 11/26/2006, 10:18 pm, in reply to "Re: baby with mosaic trisomy 22" --Previous Message--
146.115.125.148
Hi Cynthia,
I just tried posting a message at 22 central but I think I lost it. I had not checked the site for a while and just read your message today.
It is great that your baby found a home and that he even has a big sister now to teach him lots of things. My Isa was also a small infant and she weighed 16 lbs at one year old. She sat up on her own at about 8 months, crawled at a year and walked at 18 months. Her speech developed a bit slowly too but she does fine. She is 4 years old now and speaks English and Spanish. She is hard to understand sometimes, her pronunciation can be funny (for example, her "f" sounds like a "p" and her "s" sounds like a "t"
. Those who are not familiar with her may have a harder time understanding her. She attends 2 preschools- one for special ed where she gets speech and physical therapy, and another for regular kids.
Isa is now 38 inches tall and barely 30 lbs (3rd percentile in growth charts) and her left side of her body is slightly smaller than her right. Her left leg is almost one inch shorter but she has learned to compensate well when she walks and it is barely noticeable. Her left shoes are fixed with a half inch lift. Her face looks pretty symetrical and only we (her parents) see the tiny differences between sides. Her eyes are wide-spaced and she also has a tiny nose and a tiny chin. She was completely toilet trained by three and a half years old (more like three quarters). She is a cute and happy little girl.
Take care,
G
: 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
:
: --Previous Message--
: 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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