[tri-med] doctors

----- Original Message ----- 
From: "Kobe, Abraham A" <Abraham.Kobe@xxxxxxxxxxxxxxxxxx>

> Hello David & Tracey
> Sorry to barge in on your conversation

On these lists Abraham there is no 'barging in' no conversations. Think of
it like sitting at a big round table with 20 other people and how
discussions ebb and flow with people popping in and out of various ones.
All conversations on the list are 'open' for anyone and everyone to join.
Quite often it even helps to being out new ideas, suggestions, lines of
questions...very helpful. The more that participate in each line the
better!!!!


>.The doctors here don't seem to have any idea how to deal with Tha=
> ndo's case,which frustrates the living daylights out of me.

I believe SOFT www.trisomy.org  has booklets for trisomy 13 and trisomy 18
for purchase. They may even have some contact info for S Africa...maybe....

While you gather information, statistics, suggestions etc to share with her
doctors you will become a leader. Once they figure out you know what you are
talking about they may follow you, taking your guidance and look how they
may grow!
Also, if you can print off pics of t-13 affected individuals to put with
your information it may show the drs that there ARE survivors out there.

>I am not sure if Thando has Trisomy 13 mosaic,full on monosomy as well and
> speaking to you guys made me aware that I was not properly informed

If possible, get copies of ANY AND ALL tests that Thando has had since
birth. It is so invaluable later down the line to have your own set of
everything (neatly bound in a folder is best) so that you are up to speed
and when you visit the various drs you have all pertinent info even if they
don't.

>Abraham (Princess Thando's dad).

ROFLOL   Well, I see Thando is ruling the homestead!  :0)

Michelle mom to Alex (18, partial trisomy 14 mosaic) and Molly (15)
MichiganUSA

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

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