Re: Re: High ketones the culprit? to Caitlin

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Lily sounds a lot like . has very good fine motor skills. Her ketones

were lower than usual tonight. Now I am wishing I would have given a snack to

up them... hope she makes it through the night, seizure free. Nite... .

cchatch1402 cchatch1402@...> wrote:Lily has had a vision therapist all

along, I'm not sure how much she's

helped. She still has it through the Intermediate Unit. So far, I'm

happy with them. Lily started on the 7th.

I'd be more than happy to post a picture, but I'm not sure how or

where. Any advice? And thank you for you kind thoughts. I'm praying

that she will walk one day. Her PT is convinced she will, which is

great, because she's fabulous. Lily is definitely less defensive than

she was, but is still pretty uninclined to let you touch her hands or

to hold onto anything but her bottle. She can certainly do it, and has

some pretty good fine motor skills (she used to peel her eye patch

off, nice as you please, with the most precise pincer action) but she

plain doesn't want to use those skills. We have to keep encouraging

her to do it.

Lily will tolerate being cuddled as well, and if I could have kissed

her better, she'd be fine by now. She is moving more and more,

but mostly wiggling in place or rolling. She is starting to stand,

readily, from a chair, which is a new thing, and great as well.

Of course, as soon as I make a big deal about her seizure free status,

she has an episode. On the whole, it was relatively mild ( a drop up

to 2 seconds in length, one at a time, 15 minutes apart.) I shorted

her Klonapin yesterday, and don't know if that is why it happened, but

I'm going to be more diligent. She was fine after a little nap

yesterday (gave her an extra Klonapin) and was good today. So, we

start again....

> >

> >

> > As for not upping meds, I'm not ready to completely buck the

neuro.

> > Whatever it is, it seems to be working, at least for now. We were

> at

> > 3.75 and went down to 3.5. She gets plenty of fluids. She likes

> to

> > drink from her bottle, thankfully.

> >

> > She has been standing from a chair, with a little assistance, of

> > course, which is great. I wonder if she'll just skip crawling. I

> > hope so, in any event, and that she continues to progress with

> > standing and, later, walking. My fingers are crossed, in any

event.

> >

> > Best to you and ,

> >

> > Caitlin

> >

> >

> >

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