Friday, October 16, 2015

Appetite re-appears

That niggling optimism is bubbling up again and I'm having a hard time suppressing it.

During three days last week, C. had an increase in seizures unrelated to fever. I even postponed her next Rivotril reduction by a day. But on the heels of all that came a surprising turnaround.

First, was the return of C's appetite which, for two months, has ranged from non-existent to barely sufficient. Now she shovels in the spoonfuls, without her frequent interruptions for sips of water. I've actually been refilling her bowl instead of refrigerating leftovers. And her assisted walking is as good as it ever gets.

There's nothing like a bout of regression to make you appreciate the minuscule blessings.

Now for the why: I'd like to attribute much of this turnaround to the fact that we've weaned C. off 78% of her Rivotril and, of course, she's still getting cannabis. That would mean the promise of further progress when we've eradicated that drug from her system. Time will tell.
This was also the week of the annual parent-teacher meeting. As in recent years I played hookie and relied on a report by my Hubby who dutifully attended.

It seems that the "powers that be" at school have decided that C. needs a head support because of all her backward head dropping (see the photo above).

Since C. has been doing this for nearly two decades and the sky has yet to fall, I don't get the danger we risk by leaving well enough alone. After she flings her head back, she always re-centers it independently within a split second. I'm loathe to restrain her any more than we already do.

If you have had any experience with this situation, I'd love to hear what your experts advised.


Elizabeth said...

This is indeed good news, and I wish you luck and strength as you continue the wean. I'm not sure what to think about the head restraint business. I think you should go on your instincts -- is there a "halfway" sort of restraint that won't necessarily restrain her too much but prevent the head from dropping too far? Sort of like the headrest in a car?

The Sound of the Silent said...

That's a good idea, Elizabeth. I'll run it past the therapist who raised this issue.