[tri-med] Re: Need reassurance

----- Original Message ----- 
From: "Julie Johnson" <jules519@xxxxxxxxxxx>
>We don't want our daughter to
> suffer needlessly, but we also think she could surprise them all (though
I'm
> not sure they really care).  Some days, mostly when I'm exhasuted, I think
> we are just prolonging the inevitable, but other days, I feel in my gut
and
> my heart that she is strong enough to come off the vent and go home and be
> happy.

Hi and welcome Julie! Congratulations on the birth of Miss Emma Grace.

It's always hard to make these tough decisions. Rock and a hard place
because there is no 'right' or readily apparent answer.

Now I do realize that is no help......sorry.
You have to take the information you have, look at YOUR situation and make
decisions based on what is right for YOUR family.

Some folks have had very positive experience with medical professionals and
some have had experiences from he**. It's difficult when there are no viable
options to change hospitals/practices/drs.

Alex was 12  months old when we got the trisomy diagnosis. Therefore, we
didn't get the 'incompatible with life' spiel that most get. Nor did we get
the 'he can't won't ____" mind set. So we were never immersed in the
situation that you are.

Michelle mom to Alex (17, partial trisomy 14 mosaic) and Molly (14)
MichiganUSA


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

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