Re: Re: Expectations/measurements

February 22, 2000

Hi Dennise,

Thanks for your thoughts and ideas. I'm back to my normal level of

worry/concern these days! I think a 5 week checkup on the GH is

early...and, prior to this listserve and the GH listserve, I would have

even thought 6 months was too short a time to judge success of GH. So,

we'll see. Our next visit is mid-May which will mark 5 months on GH.

I didn't get any responses to my question about when the GH kicked

in....and I posted it on the GH listserve too. I was afraid that was

because everyone else experienced great growth during the first 5 weeks and

they didn't want to be bearers of bad news!(!@($

I've also been thinking a lot about 's comment ...something like

" focusing on what our children are, not what they are not " . I think there

is so much wisdom in that. Sometimes I think our kids get over analyzed

because they have a diagnosis. On the other hand, as a first time mom,

I'm always open to what people have to say about .

I like the tip about taking two more bites. In 's case, she is

really just learning how to eat. From reading here, I think has the

most extreme case of eating issues. She has only been taking nutrition

orally since 2 1/2 years, and that includes drinking. Her oral aversions

were so strong that she put nothing but her fingers into her mouth. She

has done a lot of vomiting in her lifetime. She has a super sensitive gag

reflex. And she has tremendous oral sensitivities (actually other sensory

based aversions I've come to realize). Anyway, through great OT services,

she is overcoming the oral issues....but it is so slow. She is now able to

take 4 ounces of puree by mouth. But, she still can vomit if too much was

on the spoon, or if the spoon reached too far back, or who knows what else.

She has no chewing skills. We are just working on those now. The chewing

is really challenging to learn at this age. She is learning it

cognitively. She has no intuition (or whatever it should be called) to use

her tongue in the chewing process. So, if a bite of teddy graham falls

off her back teeth and into her mouth, she doesn't know how to get it back

onto her teeth for further chewing. Can you imagine learning something

so primitive in a cognitive way? I see it every day, and yet I still

can't comprehend the whole thing.

Irene

Mom to , 3 years old, G-tube, GH, 24 pounds, 32.5 "

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