[tri-med] Re: Fw: trisomy 18--jo


>>>>> your daughter who was diagnosed and is now two-what kind of
disabilities does she have? i was told t-18 was incapatible to life? i hope
you dont mind me asking. please feel free to respond-<<<<<<<


Hi Jo, my daughter Rebecca has trisomy 18 mosaic ( although her percentage
of normal cells is small about 9 %)  we did not know of her t18 until after
she was born, we were also given the prognosis that she would not make her
first birthday, Rebecca will be 11 on June 6 2002!  Rebecca does very well
for a trier, she is certainly very delayed developmentally esp. in her
physical abilities, she can sit by herself but can not get in or our of
sitting by herself. Rebecca used to weight bear with our support but as she
has gotten heavier she has stopped doing this ( weight is now 57 lbs and 4'
1")  she can walk back wards in her pony walker. Rebecca nods for yes and
shakes her head for no. she can work a switch and seems to understand cause
and effect but prefers to play with the switch wires which really annoys her
teacher :0)  Rebecca is g-tube fed, she has GE reflux, an ASD and seizures
( mild) when she was younger she suffered from many resp infections, now she
does very well and this winter has been sick less then the rest of us. she
has never in her life been hospitalized for illness ( for tests, surgeries
and when she broke her leg) Rebecca's receptive abilities are far above her
expressive abilities she listens to conversations and has been know to give
a snort of annoyance when something is said about her she does not like, she
loves TV and laughs at the right points, and thinks it so funny when her
brother gets in trouble  :0)  I am working on a photo page to post to the
list but if you want I can send some pictures of Rebecca to you personally,
also we are the Hardy's on Karen's Rainbow families page

Be brave. Even if you're not, pretend to be.  No one can tell the difference

Susan mom to Rebecca t18m age 10 and Mark ADD/LD age 9
Newcastle On Canada
hardyboys@xxxxxxxxx


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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