Tuesday, October 23, 2012

Growing boy

Q's awesome PT fixed the wheelchair today - back pulled up higher, headrest dropped, side supports measured, repositioned and tightened down, footrest adjusted, and front tire re-inflated.  The setup looks great, though the chair now needs to be partially collapsed to get it into the van, or tilted back with the footrest closed in order to get it inside before it will fit inside.  The tire thing is driving me a little nuts.  We've been pumping them up over the last couple of weeks and they're clearly just not holding air for more than a couple of days.  I had hoped they'd hold better than that, since the budget isn't currently allowing for any unplanned purchases and I think we're out of the internal tire repair goo.  I'll look again tomorrow.

The boy has grown rather a lot since the surgery and ensuing appropriate management of gastric emptying, and now needs the next size up in leg splints and pants.  So crazy!  His therapists are currently working on prescription requests for 2-4 sets of hand splints, new AFOs  (feet), wheelchair, and walker/stander base. 

Meanwhile, Q has been spelling words in pool OT.  C-A-T,  W-E-T,  R-A-T,  T-A-P.  And "Ryan" - a pool therapy buddy.  This has prompted his OT to question whether or not he's getting enough cognitive stimulation in school.  Not because the team there is necessarily falling down on the job, but because he's a subtle and complicated kid, and therefore hard to read, hard to assess, hard to draw measurable responses from.  So.  Lots of challenges.  Never a dull moment!

Here's hoping you all are having a sweet fall, a lovely time of cozying in with your people, and looking forward to wrapping up 2012 - it seems like it's flying past!  XO.

Thursday, October 11, 2012

Day in the Life

12:04am - Reposition Q.
1:30am - Reposition Q.
4am - Awaken to Q giggling.
4:40am - Still giggling, shushing him is even funnier.
6:30am - Turn off alarm.
7:30am - Rocket out of bed as Q's helper arrives to feed him breakfast and get him off to school.
8:25am - Fly out the door with girls and breakfast, drive to violin lessons.  History CDs en route.
9:30am-12:50pm - Violin lessons, taking notes, make notes for history lesson plans, take several calls re: Q and meds, girls alternately in lessons, doing reading and math assignments, and cleaning/helping with punkins.
1:05pm - Freeway on-ramp, more history en route.
1:40pm - Deliver mom's cell phone to her at work and have lunch.
2:45 - After being stuck in traffic for too long, determine that there's no way I can get to Q's AAC appointment before it's over, head to get gas instead, swing by the discount plant dude.
3:20 - Arrive home, unload people, do reading exercises with one kid.
3:30pm - Q's helper arrives.
4pm - Leave for orchestra, plant research and history reading while girls practice.
6:10 - Arrive home, start soup.
6:20 - Head outside for a speed-clean and organization of garden (rain starts tomorrow), squish one kid's toe with wheelbarrow full of dirt (sob).
7:30pm - Feed the people.
7:45 - Q hits the sack with meds, research literature titles for download while one kid writes a fan letter to the author of her math curriculum.
8:45pm - Read two girls to sleep with Bunyan's original apology for The Pilgrim's Progress.
9:20 - Listen to last girl rhapsodize about algebra.  (Yes, algebra.)  (Not the same kid who wrote the fan letter.)
10pm - Last kid to bed.
11:11 - post this and dose Q's meds before falling into bed.  (thud)