[ Post a Response | 22q Deletion Interest Board ]
Posted by Jeff on 5/21/2006, 9:49 am, in reply to "Re: daughter with 22q13.3 del." --Previous Message--
66.220.118.206
Hi Kiley, thank you for the information. It has been hard for my wife and I, and any insight into our daughters future is very helpful. She seems to be improving on her muscle tone and has started to "crawl" for toys. Any other info on what we may expect in the future would be great. It is nice to hear that your daughter is doing so well, it gives us hope for the future. Thanks again- Jeff Gibbons
: My daughter just turned 7 on May 14,
: 2006. She has the same deletion but
: she is mosaic which is a little diff
: from your daughter. Half her cells
: have the deletion and the other half
: are normal. She has had her
: development delay's and she
: functions like most children her
: age. I still dont full understand
: everything and I have known about
: her disorder since she was about
: 4yrs old. But I can tell you this.
: With my daughter she doesnt display
: all the things you read about on the
: web pages. She has the speech delay
: and motor skill delay but other than
: that she is just like every other
: child I know. She did have potty
: training problems. We didnt get her
: potty trained untill she was like
: 5yrs old. Only time will tell for
: you daughter. I was very scared at
: first when I found out. She is my
: first child and my only. She is very
: loving and sweet, I couldnt ask for
: better! If you ever want to ask me
: anything please feel free to ask me.
:
: --Previous Message--
: Your daughter is the sweetest little
: girl in the world and you and Renae
: are great parents who will provide
: Ellie with all the love and support
: she needs to be all that is
: possible.
:
: --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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