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To Satnam re: fasting

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Dear Satnam,

Thanks - Lily had a very sleepy day, but we are sort of on track for

her feeding, which is good. I'm going to try to give her her dinner

in a little bit. She eats such a small amount, I never thought of

skipping a meal now and then. I'm just hoping we are now not off to

another rough patch.

I suppose if Kristan doesn't mind skipping meals, and it helps, it

might not be the worst thing. I'd be afraid of her not getting enough

protein, though. I think Lily isn't getting all she should, but only

by a little. Her calorie count is low because she's not very active,

so that makes it hard to fiddle too much with the proportions.

Take care and best to Kristan.

Caitlin

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Hi - sorry not to reply sooner, been fairly hectic here. Lily was

pretty groggy yesterday, but today was much better. She stood from

her chair so readily, once she shocked her therapist by initiating it!

That was a first. She is getting used to the people at the IU - and

they are getting used to her and to the idea that she can do a bit

more than they expected. Of course, the day of her evaluation, she

had a seizure right in the middle of it, so they didn't see much.

ON your earlier post - Lily mostly has her seizures just after waking

or early evening. She does have them in the middle of the

afternoon, but they are rarer. Sometimes I wonder if she senses

something coming, because she cries for no apparent reason, and then

ususally has a seizure within an hour or so. Of course, she can't

tell us for sure, but that's just my guess.

> > Dear Satnam,

> >

> > Thanks - Lily had a very sleepy day, but we are sort of on track

> for

> > her feeding, which is good. I'm going to try to give her her

> dinner

> > in a little bit. She eats such a small amount, I never thought of

> > skipping a meal now and then. I'm just hoping we are now not off

> to

> > another rough patch.

> >

> > I suppose if Kristan doesn't mind skipping meals, and it helps, it

> > might not be the worst thing. I'd be afraid of her not getting

> enough

> > protein, though. I think Lily isn't getting all she should, but

> only

> > by a little. Her calorie count is low because she's not very

> active,

> > so that makes it hard to fiddle too much with the proportions.

> >

> > Take care and best to Kristan.

> >

> > Caitlin

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