Saturday, October 03, 2009

In review

What a week.

Last weekend was our church retreat. It was fantastic to spend some time in renewal, especially next to the ocean. I really can't say enough about it -- good food, great setting, fantastic conversations, kids coloring and taping and gluing and loving it. It was a special time, spent getting to know some really lovely people a little better. I'm especially grateful to our pastor, who took off after a group of kids who fancy themselves as young mountain goats and had sprinted ahead of the hiking group. He caught up to them to stridently warn them back from the edges overhanging the whirlpools and point them back toward the rest of us. Small shudder there, but all's well that ends well. Yes? Yes. (We just won't speak too much about my hike, which was with a dad and his son, all the way up to the bridge -- is it 400' above the point we spotted the runaway group on? We guessed wrong at the fork in the trail. Hooray for quads and glutes, baby.)

Monday was a relatively quiet day. Q's chair needed picking up, since he had extended himself fully out and broken off the very strong footrest, right at the screws. We'd had a loaner for the weekend from the pharmacy/supply place while they reinforced a new footrest and replaced all manner of other stuff for the boy. So we did some school, then packed up our stuff to go to the dentist (no cavities for all four big kids, hurray) and take off for the pharmacy. Looked at furniture with my mom at a going out of business sale, then made a quick stop at Trader Joe's for part of the week's provisions before heading home to make supper.

Tuesday we had the usual therapies and school, Q's chair got a substantial tweak from the equipment modification expert at the therapy unit, and I took a friend and picked up a table and it's chairs from a Craig's List ad. I was going to offer them less than they were asking for it, but he's Navy, and well, I couldn't do it. Besides, the set is in good shape and he packed it up so nicely. It's a perfect size to spread out at for certain children who are doing ever bigger projects and research and needing a thousand books plus computer access, simultaneously. And it has a leaf. I'm very pleased to have found it for such a good price.

Besides piano and violin lessons and schooling done in between, Wednesday was Q's first day of school. Can you believe it? Kiersten shot a couple of pictures, so I'll have to see if I can share some here. The preschool teacher is a dream, really. Q loves her already and thinks he might be fine if I were to just leave him there and bring in some food sometimes. I mean, there's a PT (love her -- the one who added that he's a bright and delightful boy in the last meeting with the school district), the nice teacher lady sings and claps with him, there are instruments to shake with the music, he gets to color with markers. Who wouldn't want to move right in? Next week, the SLP will be in and the PT will be dropping off a couple of seating arrangements to try with him, including something that looks like an oversized Bumbo seat. A trip to Target for clearance shirts for me, clearance blankets for some of the kids, and generally everything but the shampoo that I needed, and we were off to home for leftovers for dinner.

Thursday was Q's neuro appointment. The big kids stayed home with a friend, cleaned up and did chores and schoolwork, while Q went off to wow the neuro guy. It's always fun to watch, how the neurologist grins back at the boy when his infectious smile spreads across the little chubby-ish cheeks. The bottom line for this appointment: the neurologist is happy to see him making progress, glad that he has services in a classroom, is continuing to learn at home as well, and is having several visits a week at the therapy unit. Glycopyrrinate and Baclofen were discussed, for drooling and tone/spasticity respectively. The former can cause constipation while the latter can cause sleepiness. I'm not seeing either as being an absolute benefit at this precise moment, but when Q returns in January, it will probably be to discuss how we'll proceed with those meds. If he has a drop in tone with the Baclofen, I'm considering pushing immediately for a lumbar test dose and then, if that looks good, on to the intrathecal pump. I do want to know, as Q's OT raised today, how high up various local docs are willing to place it. There's some concern about cranial nerve/cardiac affect, if it's placed too high, but too low, and the fine motor changes that we'd be really hoping for don't show up at all. Plus, there's gravity to consider too -- the meds would flow down from wherever it's placed... So, more questions than answers at this point, and I have that thought of eye surgery flitting around in the back of my head. I'm wishing I could defer to someone else for some of this, or at least bounce it off someone.

And today -- two more therapy appointments, plus general clean-up and some school, lots of reading. I let the kids be a little bit lazy today (read: watch tv during the day) because I was so tired. I've scheduled them so they can have a little of that, and we needed it today. Plus, the general cleaning up part of the day has brought on new projects and enlightened us as to other things that need our attention. And we'll be having a very busy weekend, lots of family in town. And next week looks fairly tightly booked as well. Lots to do and see. Pray with me that on Monday I will be not any kid of sick, and certainly not the kind that involves water and waves. I've never been really sick on a boat before, even when I was pregnant and we were in a storm with twelve foot swells I was just queasy, but the time before last when we were all out it was horrific. This time that's not an option. It will be just me filling the position of parent/grown-up and my charges are in it for actual education. So, yeah. If you have any helpful tips, please share. I'm taking anything from meds to meditation. I'll take suggestions for the children as well, since they may or may not be just fine. It's hard to tell.

Hope you are looking forward to a peaceful and renewing weekend with your beloveds, carving out some time for true communion, a space in which to deeply rest and become you, only calmer, happier, more thankful, loving and kind. Take good care, and have a good sleep.

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