[tri-med] Re: Seeking Help

>>>>>>>>How fortunate you are that your child is so high functioning.
Rachel isn't
anywhere near that cognitive.  How I wish she could do all the things you
describe.<<<<<<<<<<


never say never Amiee, remember your Rachael is only 2 1/2  and my Rebecca
is 12 1/2 yrs,   and yes They would probably label Rebecca severe/ profound
ect.  As we all joke about her, we can tell the wheels are turning, we are
just not sure what she is thinking about. We have never had her tested for
developmental age as I am sure that I would be very unhappy with what they
would tell me. And she is happy and interacts with us and that's good enough
for me



>>>>>>  I am
going to stick with my team of doctors and I am glad that they are willing
to admit - from observing Rachel's life - that the statistics might be wrong
in some instances.  They really don't have all that much to work from since
so many of our precious 18's die early.  Rachel is teaching them and they
are humble enough to learn from her.  I thank God that her life has this
meaning added to it.<<<<<<<<<<



I wasn't meaning to say your doc's were wrong, its just that most text books
are so out of date its pitiful what is written.  And I hope I didn't offend
its just that I get so tired of the general idea our kids can't/don't ect.

>>>By the way, how is it that your doctors were able to determine that
Rebecca
has 7% normal cells?  I would love to know of a way to determine what
percentage of normal cells Rachel really has.<<<<


When she was born the initial blood test that was done to determine what was
wrong, they tested 100 cells, in that 100 cells they found 93 t18 cells and
7 normal ones.  Of course that is not very accurate as it ( the results )
would differ depending on the group of cells that is tested, and as Karen
says it can also differ by what is tested, i.e. blood, skin ect, we have
never had her retested.


Don't fight with dragons, for you are crunchy and good with Ketchup.

Susan mom to Rebecca trisomy 18 moasaic age 12 and Mark LD/ADD age 11. wife
to Glenn
Ontario Canada



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

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