[tri-med] Re: A little-Oops! I mean long!- Keren note :)

----- Original Message -----
From: "Kraig Warnemuende" <ad6075@xxxxxxxxx>
 We saw her PT today for
> our weekly visit and did a "report card" which showed improvements in
> almost all areas--very encouraging!

Very positive report.


>
> onto her sides as
> she often does.  Only this time she just kept on going and went from
> her back ALL the way onto her front!!!!!

Whoo hoo Keren!!!!!!!!!!
Keep on rollin' girl.            :0)

 >.  Oh yeah, she's been more congested lately
> and so obstructing more again--c-pap, here we come!

How do you feel about that Loren?

> Every now and then discouragement washes over me.  We have her Thursday
> morning group time with the other Early On kids in the district, and
> when I see the kids younger than Keren doing things she's not I have to
> try not to think about it.  Even the one little Down's boy is way ahead
> of her in certain things....  I find, though, that when it's just us,
> or us out and about without other kids, things are just fine.  Our own
> little world is full of continual growth and adventure....

{{{{{{{{Loren}}}}}}}}}

It's all part of the recurrent grief/chronic grief cycle of being the parent
of a child with special needs. It never goes away.......even while we love
and accept our child--even when  we are grateful for our children's
accomplishments etc.
 Dare I say it's a "normal" feeling?

>We're also going to have another, more thorough ABR
> done under anesthesia this time (last time we did it she obstructed too
> much and we couldn't get all the info).  I'm not thrilled about that,
> but the good thing is we'll also have a CT scan done on her ears to get
> a better picture of there structure.  Her ENT is really on top of
> things and I'm pretty confident in his take.

Sounds scary. What do they plan to do with the information?

> He understands Keren's
> idiosyncrasies without making it out to be a lost cause, or, on the
> other hand, the most amazing thing he's ever seen.  Sometimes it's nice
> not to be considered an anomaly!

Amen.

Michelle mom to Alex (16,partial trisomy 14 mosaic) and Molly (12)
MichiganUSA


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

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