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echo: survivor
to: Ardith Hinton
from: Mark Hofmann
date: 2012-09-02 10:25:00
subject: Re: Later this month.

AH>           Relax the bowel??  I also have some doubt about this idea
AH> because
AH> the average kid with DS has no problem with relaxing various muscles.  It
AH> came as a shock to me, as a mother, when I realized how stiff & tense
AH> other
AH> people's kids seem to be by comparison.  One of the endearing things
AH> about
AH> Nora as a baby was that she'd quite happily adjust to the shape of the
AH> person holding her.  And it didn't occur to me until we lent one of her
AH> classmates a pair of boots that I'd forgotten how to put boots on
AH> "normal"
AH> kids who don't know how to help me.  :-)

Our son is also very flexible.  He can bend in ways that would make
something in my body snap.  

After doing more thinking about the situation, we have since decided to go
back to our original surgeon (whom performed the operation on our son when
he was 1 day old).

About 3 weeks ago we had another contrast study and we will be discussing
the surgery with him this Tuesday.  The good news is the area has gone down
in size, but not enough.  He is going to need a temporary
"redirection" for around 6-8 months and then the final corrective
surgery can be done and all will be well.

We are all looking forward to that..  :)

- Mark

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