[tri-med] Re: cardio experts?

> What sort of information are you after sweet? Are you after repair
> information? Or non-repair?? Life expectancy?? Quality of life??

Karen -

I guess I was just wondering what others experiences have been with this
condition.  Of course, the life-expectancy question is always there.  As far
as surgery goes, this dr told us that in his opinion, Rylie would not make
it through surgery for repair.  Not that I think it's a good idea just to
accept that and give up, but something, be it mother's instinct, gut
feeling, or whatever, tells me not to try it.  I was also wondering about
what kind of "signs" I should look for if her condition were to get worse.
Rylie seems to be acting perfectly normal to me, just the usual, constant
stuffy/runny nose.  Speaking of stuffy nose, thanks for the tip on the nasal
wash.  It certainly does the trick for Rylie!

I sometimes wonder if I'm some kind of over-reactive freak.  Everytime
something comes up with Rylie's health, I think, "Oh God, is this the thing
that's going to get her?"  Some days, even when she's perfectly fine, I
start thinking of how I would want her funeral to be, etc... and can start
bawling like an idiot.  I feel guilty for thinking this way - I think it
makes me no better than those docs in the beginning with all their doom and
gloom.  At the same time, I can't help it - it's always in my mind.  Do you
think I need some serious help or what??  LOL

Sorry for rambling and thanks for listening.

Lori Solander, mom to Rylie, 4, t-18, and Taylor, 9
Topeka, KS  USA

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

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