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

On Tuesday, October 28, 2003, at 10:59 PM, Sue&Glenn Hardy wrote:

>>>>>>>>>>  Her legs are
> getting stronger all the time and she enjoys standing up against a
> table and checking things out.  We're watching that carefully with PT,
> though--braces on the feet and making sure her back is strong enough
> and in line.  She gets a grin on her face every time she does it,
> though--it's so fun to see her getting excited about an
> accomplishment!<<<<<<<<<<<<
>
>
> keep it up!!!!!!!!!!!  Rebecca used to stand but has lost or refused
> that skill, my feeling is that she has gotten to heavy for her fragile
> bones ( of course no one has answers but that Is my thought)
>

I wonder about the long-term possibilities sometimes--it's so hard to 
know when the forward progress might stop and/or begin to diminish.  
Kinda scary--I try not to think about that much at all!  We'll enjoy 
all the forward progress we get! :)


>>>>>>>>>> Spitting up is still an issue <<<<<<<<<<<<<
>
>
> see what the doc's say , as reflux is a major issue with our kids, even
> with a fundo, Rebecca still required all the meds, we are looking at re
> doing the fundo and see the surgeon on Nov 4
>

I'm almost wondering, if the doc says her fundo has loosened some if 
it's worth going back in right now to tighten it up.  I mean, if it has 
loosened, it's probably because of her gagging, and she's still doing 
that.  Some of her gagging is because of her sensitive tongue, but the 
catch-22 is that some is from reflux.... Aaaargh!!!!  I think 
medication is going to be the main help for a while....

Loren (wife to Kraig, mom to Keren, T18, 13 mo. and counting! :) )
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075


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

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