[ Post a Response | 22q Deletion Interest Board ]
Posted by Jeff on 4/12/2006, 7:26 pm, in reply to "Re: daughter with 22q13.3 del." --Previous Message--
66.220.118.206
Hi Amy, Thank you very much for your response. It sounds like Laura is doing great, and that really does give my wife and I hope hearing that other children are doing so well. We will keep a close watch on Ellie's teeth. She already has a full mouth and is chewing very well. Please keep us informed on any news you may come across and any updates on Laura. It is so nice to hear success stories like your family. Again, thank you for your response, and hope to hear from you soon. - Jeff
: Hi Jeff,
:
: My daughter Laura was diagnosed with
: 22q deletion (I'm guessing it was
: probably 22q.11 - the Dr. never told
: us.) when she was 15-weeks old.
: She's 8 now and I can tell you there
: is hope!
:
: Laura has needed heart surgery (to
: repair a VSD) , surgical repair to a
: couple of inguinal hernias, and
: dental surgery. As far as
: learning, she's doing OK - but this
: year for the first time (2nd grade)
: , we're enrolling her in special
: education.
:
: Although she struggles -
: particularly with math and other
: more abstract concepts, she's way
: beyond a 2-year old learning level.
: I don't think she's that unusual,
: although I can't really tell you
: what's "typical" _ (except
: for the broad fact that the vast
: majority of these kids will have
: learning challenges)
:
: Also on a side note, I would
: recommend that you pay very close
: attention to Ellie's teeth. Laura
: needed some teeth extracted due to
: decay when she was only 2 1/2 years
: old. We treated her the same as our
: other four children and they all
: (still) have nearly perfect teeth.
: Afterwards, I questioned a
: geneticist and she said that -
: although they don't know exactly
: why, many children with genetic
: disorders also have dental problems.
: That was one of those: "I
: wish someone had told me"
: issues, so I thought I'd mention it.
:
: If you or your wife feel like
: chatting, please feel free to reply
: or you can e-mail me directly by
: clicking on my name-link at the top.
: Also, Mark on the board is willing
: research answers for people. He has
: a special interest in immune issues.
:
: Unfortunately, the board has been a
: bit quiet lately - I hope people are
: still visiting. I wish they'd talk!
: But there are still some of us, and
: we're all in the same boat - just
: looking for support and trying to do
: the best for our kids.
: Good luck, and post again
: amy
:
:
: --Previous Message--
: Hello, are 1 year old daughter Ellie
: was just diagnosed with 22q13.3
: deletion. My wife and I have been
: on the internet, and are overwelmed
: with the amount of information.
: However, we don't know what may
: really apply to our daughter. We
: understand that all children develop
: different, and only time will tell
: what lies ahead for us. Some of the
: information we are reading is very
: tough to take, and we would really
: like to talk to someone that is
: experiencing the same thing. I have
: read on the internet that most
: children never get past a 2 year old
: learning level?? We have Ellie in
: physical/speech/swimming therapy
: weekly, are there any other
: suggestions? What does the future
: look like? Thank you - Jeff
:
:
:
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