[tri-med] Re: Anyone have any insight or advice???

<<The lights are a great idea for stim!!! Has your therapist
suggested "the
little room"?? The little room can be a great tool for our kids.
I did my
own "stim room" for Alex with a play pen and based on my therapy
bents (I was an OT in my before Alex days) of NDT and sensory
integration.>>

Karen:
Please tell me again about your Little Room. Before Kristina
wasn't ready - but I think now she is. Please, please tell me
that story again... please...

Cindy:
As Karen said, each of our kids are different. Kristina is full
T18 but doesn't have many physical issues. Yes, she has the trach
but I don't really count that because it is for protection not
because of respiratory issues. She doesn't eat orally at all - we
are continuing to try with small bites of carrots, bananas. But
she really doesn't want anything in her mouth. It used to break
my heart that she might not ever eat a chocolate chip cookie -
just imagine :-) - but now I realize that Kristina is going to do
what she wants and needs to do. She's very strong willed.

We have been fortunate to have a PT that is wonderful working
with her. Last October when we started Kristina was not
"flexible" at all - couldn't get her feet anywhere near her face
and was most often arching back. The PT has made an enormous
difference. At 16 months she is starting to be able to sit for
1 -2 minutes holding herself up with her arms in front. She does
bat at toys once in a while - but mostly she looks and smiles and
laughs. She has pretty good head control these days - but prefers
to lie down where she doesn't have to work so hard.

The most difficult thing we can do is compare what they can do -
its also hard not to. I find that when I start going down the
road of what she can't do - thats when I start to get depressed
and feel the loss of what might have been. We try to focus on
each little thing she does do. Sometimes those things are
microscopic - but we cheer nonetheless.

I used to feel so sad that she probably would never walk or talk.
She has club feet so if she is ever to even stand she will need
surgery. Now we are actually checking in to the surgery because
just giving her the ability to "bounce" on her feet or getting
her up in to a walker seems like such a wonderful and huge
milestone. Don't know if she'll "need" her feet but I'm darn she
going to make sure that they are functional just in case!

Meredith is so blessed to have a mom like you who wants the very
best for her and is willing to give so much of herself. The
Christmas lights sound wonderful - I'm going to try it as well.
Thanks for the suggestion.

All the best,
Terre
Mom to Kevin - 15, Keith - 12, Kenny - 8, Korey - 7, and
precious Kristina Rachel - 16 months and growing (T-18)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Terre Krotzer
E-mail: rlk@xxxxxxxxxxxxxx
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