Saturday, August 21, 2010


Look at that.  I missed posting the whole month of July.  In fact, it's been two months.  I don't know what to say about that.  Sometimes I look around and realized that two weeks have gone by and I'm not sure how we've all managed to stay upright and in motion and all, and then I remember to check the laundry.  And yes, there's evidence that in fact we have been buzzing around like that.  Heh.  E's been in charge of that department lately and doing a pretty good job of it too.  More likely, at least when school is in full swing, I remember how busy we've been when I note that the grading has begun to pile up.  Good times.

Onward.  We've had a fun summer.  Spent some time on a lovely little island with lovely friends, then hauled off to a family reunion and enjoyed swimming with cousins, and the bigger four spent time with their dad.  Q made his television debut (SO cool), and concerts - including all the kids getting to see HMS Pinafore.  Q loved that too - he stood at the edge of the balcony overlooking the orchestra pit and tried to help out with percussion.  Then we had the best ever not-exactly-VBS week doing art, science, and food projects.  That visiting kids asked if they could come again on Monday for more (there wasn't more), was the surest sign of success.  I'll post the amazing pictures if I'm allowed to (copyright, privacy, etc.).  We're considering writing a curriculum or outline for what we did and selling it.  It was awesome.  And the people were great too - it was a huge bonding experience for the church with nearly a 1:1 adult (volunteer) to kid ratio.  So cool.

Following that fun week, we slept some and then headed out for some family time with auntie and uncle.  That was so cool - we rode horses (ow and hooray - it's been a long time since I learned to jump little logs and fences), saw a fly-in/out of smaller planes (including one restored by boyhood friends of my dad), and spent an afternoon out on a pontoon boat and swimming in lap-pool temperature water.  Chilly!  So Q did not go in, but he loved the wind and sun (but no pink on him, not even tiny freckles) and the boat flag.  He absolutely howled when he had to leave it on the boat - he loves to have those opportunities to be in charge.  Funny guy.

So what's next?

On more general topics, I'm asking for continued prayers regarding the house situation.  Not much to tell right now.  I spent part of today trying to nail down details.  I'll know more later in the month.

Regarding the kids, we're getting ready to start the school year with stacks of fresh workbooks and empty journals and lovely books like "A Rulebook for Arguments."  It's a little bit like climbing on a rollercoaster.  I have one offspring who is looking into a driver's permit (that thud you heard was me fainting), another who wishes to rearrange the planet to make it function better, one who worked her tail off this summer to earn money for something she wanted, and another who is trying desperately to follow in her sister's footsteps and earn her own fun stuff too.

Which brings us to Q.  I'm not sure exactly how his school year is going to work out.  If he were a slightly less complicated kid, I'd have no problem putting him on the little preschool bus and getting him back again a few hours later.  But he's not that kid.  He has to have good positioning in any chair configuration lest his clothing bunch up and begin to threaten the integrity of his skin.  A looser set-up often results in him slumping over and throwing up because his torso sort of collapses without good support (though this is happening less and less frequently).  He doesn't protect his own head like another child his age might, so I'm not sure about sticking him on a bus in his nifty Bingo chair - not enough head support, I think.  Add to that this:  the school district is looking to have PT and OT occur in the classroom, with the other kids, because they want him to be receiving services in the "natural setting," which for a four year old, seems to be a preschool classroom with a bunch of other kids, all of whom have their own issues.  This makes me a little desperate around the edges.  Q loves those other kids and would happily play with them all day, but there will probably be one less aide in the classroom (budget cuts, you know), which means that there's rarely an adult next to him.  Q does not do screamy kids.  Kids with developmental issues often have screamy issues.  Heck, smaller kids of the more regular variety often have screamy behaviors.  Q cannot get away.  So if he's stuck there, can't defend himself, hasn't the adult help he needs unless there's a 1:1 therapy situation happening - then what?  He comes home fried and doesn't want to go back because it's gone from fun times learning with the therapists and playing sometimes with the kids, to dreading the intensity of the not good parts.  I've seen him flinch at the sound of particular voices after repeat exposure to those persons being unpleasant (yelling is a very bad thing, but screaming and whining just plain sets. him. off.), and I do not want to go there.  So at the very least, there's more to learn before we know exactly what will occur for him.  I'm going to push, though, for more 1:1 therapy time and less classroom therapy time.  Both are certainly useful, but the former is vastly more useful to Q.  And since he's my concern, and not protocol or format or classroom needs, well, we'll see how this works out.

The boy has grown completely out of the stander he's had.  His hiney sticks out as he tries to fold himself down to the tray so he can get to the bowl of dried beans or whatever else is there.  So that particular loaned item will go back to the therapy unit, all cleaned up and shiny.  Tuesday next the lovely PT and the miraculous Guy Who Can Modify All Things will be holding a council on whether or not we're going to be ordering a SN car seat, a new Rifton walker/gait trainer (how can he have grown out of everything at once and so fast?), and when we should be thinking about getting ready to deal with planning for a new wheelchair - it will take about six months from the time we begin the paperwork.  And his AFOs need replacing, a process which begins with tracing the outline of his feet, on Tuesday.  He needs hand splints too, which we'll address the thirty-first with the every other week OT appointment.  Which brings me to what a shortage there is of pediatric therapists, in case anyone is considering a career change.  Q needs to have OT at least weekly, twice or three times a week would be of clear benefit to the boy, but two or three times a month is what's available.  Argh.

Communication devices.  Not much headway.  The episodic SLP guy needs more footage of Q using the device he wants to order before he can write it up to justify for coverage, a process which takes about three months.  I'm seriously considering the iPad, mostly because it's a fourth of the cost of the specialty equipment, but also because it just seems that much more flexible and effective for Q.  Give him a splint to support the extension of his index fingers, and we're off and running.  Just like that.  But it won't be covered.

We are increasing Baclofen with two more weeks to go before Q is at the maintenance dose.  I think it's working for him.  He seems to be making gains in real muscle tissue as opposed to having those tiny, bird-like legs that one often sees in kids with CP or other particular muscle issues.  When I work on his legs, there's definitely more mass there to stretch.  I noticed about a month ago that he has actual lats, a nice change - now to access the other parts.  His swallowing is better on the Baclofen too - better oral motor skill, use of lips, far less excessive tone, more appropriate swallowing and coughing, less spluttering or near-aspirating.  I would so love for someone to produce an accurate dosing system that would circumvent the need to implant a pump, though we'll certainly be looking at that as the best option, given what's out there.

And it's time to get the eyes checked again.  All ten of 'em.  That's a whole morning's activity!

On that happy note, I do believe the boy is asleep (he napped after swimming therapy today) so I'm going to go crash too.  I'll leave you with the verse from the wildly successful not-VBS week.  (Can I get an Amen?)

Taste and see that the Lord is good.
Psalm 34:8


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