I thought that I’d give you a brief update on how little Abby is doing. As you may remember, my daughter’s 4-year-old niece suffered from several minutes of asphyxiation in a playground accident. She emerged from a week-long coma with clear physical and behavioral signs of subcortical brain damage.
Abby is now a month out, and is still in the rehabilitation hospital. She’ll probably be there for another 2 months (or longer). Abby is still stiff, and is still being treated with anti-spasticity medication (although she is on a low dose). The hospital was organized to provide several days of physical therapy/ week, while she rests on other days — but with Nancy Byl’s help (Nancy is a long-time friend and collaborator, a good soul, for many years the Chairman of the PT Department at UCSF), the parents are trying to extend that to intensive therapy every day. As well, Nancy and I have tried to help mom and dad (and other volunteers) make THEIR time with Abby count for rehabilitation, as well. Between not-infrequent days of frustration and discouragement, Abby’s mother Martha sent the hopeful message below to Nancy two days ago:
“I thought I would let you know a bit about how Abby’s progressing. She’s
had a good week so far this week. Despite a cast on her foot to stretch
her ankle and maintain range, and some gastric tests [although she’s swallowing, oral feeding is a problem,and she’s scheduled to receive a hopefully-temporary gastric feeding tube], she’s doing new
things in therapy. She’s looking side to side when asked to, and can visually track
an object. She’s voluntarily moving her hand to push a switch (a big button) to turn
on music. And she’s choosing a preferred object over a less preferred
object by looking at the one she wants when asked. This is all stuff
they are starting to see with some consistency now and we’ve been soooo
happy to hear about it. I am playing some educational videos and she’s
starting to look at the screen in front of her, at least for brief
periods of time, when they are on. I’m hoping that when we meet next
with her team of doctors and therapists, probably a week from tomorrow,
they will be agreeing that she is interacting more, tolerating a bit
more, etc. And we’re hoping that they will help us brainstorm how we can
step up the frequency of therapy on the weekend etc.
One quick question to see if you have any thoughts… Abby sleeps very
little. The time when she’s really completely relaxed, eyes closed and
heart rate down has been only about 4 hours a night.
And she takes only a short 30 minute or so catnap, only sometimes,
during the day. This seems surprising to Bob and me. It would seem
she’d need a lot more sleep than that. We’ve asked the doctors if
there’s some strategy for helping her to sleep more at night. Yet, it’s
kind of curious because she’s been doing well in therapy. Not really
falling asleep in the middle of her sessions or anything.
It is astonishing to me (and to Nancy Byl) that her therapy team does not have a greater sense of urgency about the course of remedial therapy for this little girl. They’ll meet with the parents again, a week hence. Lah di dah, indeed. Nancy is trying to help Abby’s parents change this picture. I’ll tell you about the extent to which she succeeds — and hopefully more about Abby’s neurological picture — in my next update.