Introduction - Allysa & Lexie

October 5, 2010

Hi

My daughter, Lexie and I are new to the group. Lexie is 19 mos old and was

diagnosed as Mosaic Down Syndrome at 6 mos only because my Mom had a suspicion

that she had DS or MDS so I had her tested. I quit my job when I found out

about Lexie so I am now home full time with Lexie and Calleigh (3). My husband

is great with the girls but since he works full time I have taken on most of the

responsibilities for Lexie's development and medical needs. Lexie was born in

Chelmsford, England and at the time, no one was aware that there were any

isssues. We just moved to Austin, TX and although we have joined DSACT here

(which has a lot of great activities), I am only aware of one other mother with

a child with MDS and she lives in Dallas, TX.

I am hoping to join the group to find somewhere we fit in. We have been

welcomed by the DSACT group but the effect of DS on my daughter is not as severe

as many of the individuals so I feel like I should be thankful that we are so

lucky but I can't manage to stop feeling like everyday is a fight to keep her

progressing. In addition, the more progress we make, the more ECI wants to

reduce/remove services. It's been an uphill battle and one I can't afford to

lose.....

One of the questions I have is whether you find that children with MDS do well

and then 'plateau' at some point or if they tend to continue to progress but it

just slows. I have also been told that she may never truly be able to run more

than 400 yards (we are a jogging type of family) due to the low tone. I am

curious if this is consistent with your experiences. There seem to be a lot of

generalizations made by various therapists and I would like to have a realistic

view of what people have experienced and not just assume that is how things are

going to be.

I know that every person with MDS is different but it would be nice to have a

group that has had similar experiences. I look forward to learning more about

the group.

Kind Regards,

Allysa & Lexie

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