Saturday, October 12, 2013

Try, try again

I keep thinking we'll get to a place with a little more breathing room, schedule-wise, but not so far.  E is busy with classes, K and S are busy with school work, they're all practicing like mad, we're getting three runs in a week, and Q is therapy-ing as intently as ever.  I'm writing lesson plans, wrangling paperwork, and trying to shove the medical appointments in where I can.  Which reminds me:  list.  One second...

Okay.  More stuff to schedule Monday morning.

Q had a visit with his physiatrist (rehab doc) this week.  We talked through Artane (a no for now - he's typically more spastic than dystonic), Botox (yes, which means organizing ophthalmology and orthopedics quickly - the ophtho appointment needs to move up from February), and possible equipment needs as we move forward.  I like this doc, though we don't agree on everything.  She's respectful of her patients, the family process, and always checks to see if I think her proposed course of action makes sense or if we need to rethink anything.

The bath seat was a fail, unfortunately.  It's not as tall as it would need to be for one tub, and doesn't allow Q's feet to clear the toilet in the other.  On to the next option.  Meanwhile, we await approval for a car seat and a walker/gait trainer base.

So I've been thinking about what needs we have emerging here for Q over the next several months and years.  More immediately, we have a ramp to pay for, and fundraisers are underway for that.  Next up, a low-tech ramp type set up for the van would be terribly useful.  The chair is 60 lbs, so we all "lift heavy" every day - which is awesome, because we can, the big girls and I (though we have accompanying bruises), and we're glad to be able to, for as long as we can.  But one begins to be mindful of things like effort spread over Q's lifetime, of his continued growth, of our own fallibility.  Okay, my fallibility.  The rest of the Q peeps don't seem to have any trouble naming their end points.  I guess as his mama, I kind of feel like I should just keep going.  Which...  ...mumble, mumble... may not be the most realistic way of managing all the facets of Q care, long term.  Ahem.

Other needs that loom:  a ramp for the back door and more accessible paths and areas in the yard (safety issues); bathroom modifications (hoping to push this off a little longer if we can find a bathing solution - he's outgrowing the bath seat and is too slippery and heavy a fish to continue to zoom in and out of a tub as we have been ); new flooring to replace the carpet (too much drag for a boy on wheels - safety issues).

I have further thoughts on sort of "ultimate" equipment or outfitting options, but the people here are asleep and tomorrow brings an early morning.

Have a lovely weekend, lovely people.  :)

Saturday, October 05, 2013


My grandmother turned 91 recently.  She's not as well as she has been.  My family descended upon her to sing and chat, one or two at a time, and wish her well.  The brightest moments I saw were when I asked her if she remembered teaching me to read notes when I was four, and then when the girls and I sang hymns and folk songs.  I'd like to see her again soon.

The girls are busy, busy, busy.  The challenges in getting three conflicting schedules met have kind of turned out to be a blessing.  While "stuck waiting," the girls have been able to make good use of practice rooms and library spaces, getting creative with their time in order to manage their goals.  They're working to pay for their orchestra dresses and other music expenses.

One of Q's OTs mentioned today that it's probably time to think about different solutions for bathing.  There's a rolling seat that (I think) cantilevers over the tub so there's no transferring a slippery, heavy kid into and out of tubs.  Right now, E and I lift him in and out, while grandma or K "catch" him in a towel.  So the rolling seat may be available for loan next week.  The possibility of a great solution is pretty exciting.

The house is quiet so it's time to crash.