[ Post a Response | 22q Deletion Interest Board ]
Posted by Kiley on 5/22/2006, 10:11 am, in reply to "Re: daughter with 22q13.3 del." --Previous Message--
209.213.26.171
: 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
:
: --Previous Message--
: 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
:
:
:
:Jeff, Im am happy to know you read my post.Your not alone, though with my daughter I felt like I was. I had my family for support and the computer. My daughter had/has the hypotonia. It was one of the first things I noticed wasnt right. She didnt sit up when she was to do so. She didnt crawl on time and when she did it wasnt like a real crawl.. its was more like a slide on her stomach. She didnt walk on time. I had taken her to doctor after doctor. We were sent to a developmental delay specialist and they just said she was Developmentaly Delayed. I am like well something has to cause this. I had to take her to a Genetics Clinic on my own, and they did the blood test and found the cromosome deletion. But like I said she is a mosaic. She started school at age 3yrs old. In S.C where I live by law a child with a learning disability can start school at age 3. She was getting speech and physical therapy from age 3. The hypotonia has inproved alot with her. When she runs she falls a good bit. She is very tender hearted and her feelings are easy to be hurt. She has had a lot of ear infections, two sets of tubes in her ears. We could understand her but others couldnt understand what she was saying untill she was 4. She didnt communicate her needs at all untill after she was 3. I would just keep a schedule for food and she always had a cup of drink. Her sassy as we called it was good because they do want something in there mouth. We didnt get it away from her untill she was 5. She sleeps all night, she does like music and loves to sing. She plays alot by herself. She is not hyper or anything of that sort. She likes to watch tv alot and loves to play outside. She does grind her teeth I have noticed that. As far as her looks... she does have the little larger ears but you wouldnt notice if you didnt know what to look for. Her face from the eyes to the cheeks is a little flat.. but my face is too so I dont know if it is that or she just looks a lot like me. She looks normal she is a little taller and slimmer than most her age. She has the perfect profile from the side. She is a pretty child and I am not saying that just because she is mine. She is spoiled and bossy. But I can tell you this... the stage you are in now is the hardest and the worst. Your daughter will do nothing but grow and improve with the physical thereapy, speech therapy, and occupational thereapy. She paints and writes her name knows her abc's she can count. She just doesnt do it as fast as children her age. People say not normal... but what is normal??? All children grow and mature and learn on their own time, not ours. I dont know what else to tell you. If you ever have a spacific question for me.. please ask I dont mind at all. I dont know if you have looked at this web page but it is the Greenville Genetics Clinic.. the name they have gave this deletion is called the ( Plelan-McDermid Syndrome ) there is only like 270 cases in the world. Hope that helps. Thanks Kiley
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