In a message dated 11/13/2005 10:12:55 A.M. US Eastern Standard Time,

 

Hi Cyndy,

Lindsey was born with five holes in her heart.  Four closed on their own and the remaining hole has a piece of scar tissue which formed over the hole.  After the first year or so, Lindsey did fairly well health wise.  She was significantly delayed in her physical milestones but she did crawl, walk and she is toilet trained.  My daughter has a few words that she speaks but she signs and has signed since she was two.   She always manages to get her thoughts across and she understands what is said to her, it may take a little longer but she gets it.  There is marked mental retardation.  She tests within the severe stage but I do believe that was do a lot to her lack of significant speech.  For many years, up until middle school age, she was in a moderate classroom and did quite well.  She is currently in a severe classroom and is the highest functioning child in that group.  She would do best, I believe, in a higher functioning classroom.  She can read her name, names of siblings, my name, pets,  and her address.  By this I mean, if those names are written down and you ask her where is Mom's name, she will point it out....with a lot of flair I might add.  LOL. 

 

The one thing I'd like to make  to those of you with young children , is that around the age of 14, Lindsey's bones began growing at a much greater rate than her bones.  Thus we are fighting contractures and she is cannot walk like she did when she was younger.  As there was so little information available we didn't know if this was a known part of the syndrome or not.  My guess is that it is so I'd like you all to be aware of the possibilities.

 

Remember Cyndy, that my daughter's diagnosis is somewhat different from your's and each child is different.  Be aggressive in your therapy, speech, physical, occupational, and you may be surprised. 

 

I'd be happy to answer anymore questions should you have any.

 

Good luck,

Kimberly

 

tynty@... writes: