[tri-med] Re: Seeking Help

>>>>So, long story short, the doctors and therapists we work with have
always
seemed delighted to be able to have an 18 as their patient. <<<


so glad to hear that the doc's you have encountered for the most part have
been great!  That's what we all hope for. And most of us tuff the ones that
are not.  And we really don't mean to be negative but we do vent here.  I
for the most part am not unhappy with Rebecca's medical care, but I do
realize that some of what we are dealt is due to her DX. ( mostly
cardiology) now I know I could push for more frequent visits, and more
tests, but do I really want to put her through surgery?  She is doing well,
and is 12 but I often wonder and really feel that if she was a  "normal
child" she would have closer follow up.  So as I can't really have issues as
I haven't pushed the issue, but I do realize she would be treated different
if she were "normal" that's were some of the attitude comes from. Also
things like being asked for a DNR for her first surgery which was tubes in
the ears......... ( still don't like that anaesthesiologist when I see him )
the prejudice comes in small ways and over the years adds up, i.e. I asked
our physio re botox injections and the reply was, well its usually CP
kids.............after exam she did not need it...........yet but still the
feelings are there......


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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