[tri-med] Re: Seeking Help

Susan:

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.

I appreciate that our doctors are honest with us.  Our geneticist was giving
us his personal experience with T-18 patients.  Since most die within the
first three days of life, he doesn't see many long term survivors and those
that he does see usually have the typical profound or severe mental
retardation.  In fact, our pedi did her residency and fellowship at
Cincinnati Children's Hospital Medical Center (CHMC), one of the top
facilities in the country, and, in the eight years she worked primary in the
NICU, she never saw an 18 discharged - they all died.  Rachel is the only 18
she has ever known to be discharged from the NICU.  So, I guess I understand
why these doctors have such a negative opinion initially and why they were
skeptical until they saw how well Rachel was doing.  But, as it turns out, I
am learning from this chat group that Rachel really isn't as high
functioning as we like to think.  Many of the parents who have described
their children report many skills well beyond Rachel's capabilities.  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.

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.

Many thanks for your insights.

Aimee in Cincinnati, Ohio (USA)
(wife of Bob; mother to Rachel 2-1/2  (T-18), Jillian 1-1/2 (our China baby)
and Ian 6 months)

----- Original Message ----- 
From: "Sue&Glenn Hardy" <hardyboyz@xxxxxxxxxxxx>Susna:
To: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, January 26, 2004 2:01 AM
Subject: [tri-med] Re: Seeking Help


>
>
> Don't fight with dragons, for you are crunchy and good with Ketchup.
> >>>>>>>>When I took
> Rachel for her six month visit, she smiled at him and he told us that
Rachel
> is the only T-18 who has ever smiled at him. <<<<<<<<<<<<
>
>
> These doctors! My Rebecca T18 M but only 7 % normal cells, smiles at
people,
> flirts with people, extends her hand to hold hands ( which she loves to
do)
> loves to be told she is pretty,  makes choices, prefers red clothes,
> doesn't like the dog,  says Dada, knows when she doesn't know someone,
wants
> to hold what you are holding and show territorial issues over what is on
her
> w/c tray. She will answer yes and no questions and will even joke with you
(
> one day she came off the bus all happy looking, I asked her if she had a
> good day and she shook her head no, I asked her if she was joking with me
> and she smiled and nodded yes. She listens to what is said and we can tell
> if she doesn't get it, as she wrinkles her brow ( she understands plain
> simple language but not things like metaphors)
>
> Susan mom to Rebecca T 18 m age 12 1/2
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>

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

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