Meghan (and her whole family) dropped by a week ago, and very kindly stood in for Jon in his body test. And since then, he hasn’t been idle.

Jon has been on the Wii Fit every day, not only having a short or long run, but also doing Balance Games. He’s particularly fascinated by Ski Jumping, which consists of staying in a crouch, weight forward, then standing quickly at the end of the ramp (not jumping, you will lose all points). If you don’t extend quickly enough, or in Jon’s case, your foot pressure is mitigated by you pulling yourself up with your arms on your stander, you will fall off the ramp and roll down the hill, gradually becoming a huge snowball.

The view from the top of the jump ramp

The first day, Jon was nothing but a snowball, but that was okay by him: it’s hysterically funny. The next day he announced he wanted to be a snowball again, and I thought, “Oh, my aching back. What a waste.” (since I have to assist with everything). But Laura happened to come in, and she focused on his feet (placing them, keeping them from turning—the uneven tone of CP makes even basic standing a tricky, unpredictable event), while I focused on his gently touching his thighs and torso to remind him how to stand. He gets to the end of the ramp and BOOM!…Jon was flying. And he pretty much has been since.

Jon successfully jumping

Jon’s personal best is now 125 metres over two flights. But being a snowball is still pretty hilarious too.

Jon has also improved heavily in Slalom Skiing (as of today, he’s the reigning household champ) and Soccer Heading (beating my current score, but not Laura’s), but boy, a workout for him is a workout for me and Laura. As Laura keeps the feet more or less in position, I have to help Jon lean his torso, focusing his weight from left to right. It leaves my torso pretty tired. We can’t do more than 10 minutes at a time. It’s particularly interesting when he gets a bout of clonus in either foot, which completely confuses the Wii Fit balance board.

Between the walker and the Wii Fit, Jon is focusing more on pushing his weight into the floor, something we’ve been trying to work on for the past ten years. This bodes well for the future.

I can honestly say that I never thought the day would come where Jon would be entranced by joke book humour, the way many boys are, repeating their favourite corny joke over and over from a limited selection of all-corny jokes. Not that it’s a physical joke book, but an online collection at the Between the Lions PBS site. But the rest of the behaviour is identical, especially the uncontrollable cackling laughter that makes you wonder if he’ll die from asphyxiation or loss of bladder control first.

Then comes the swell of pride, since his favourite joke is a pun. Ah yes, Daddy’s boy. 🙂

Where does a cow go on Saturday night?
To the Mooooo-vies

Thanks, you’ve been a great audience. Try the veal.

So Grandpa, through canny instinct and stealthy stake-outs, found a Wii Fit last month, and gave it to Laura for her birthday. We started into it immediately, but found it much harder than we had expected from the trailers. But we’ve hiked up our socks, and in our spare moments we’ve begun the various activities and started unlocking new games and exercises.

There’s a heart-breaking element to this though, and it’s Jon. We initially thought that because of his cerebral palsy, he wouldn’t be able to use the step-like Wii Fit Balance Board. Once he saw others playing it though, he was confused and sad, and couldn’t see why he couldn’t play. But I got an idea: why couldn’t we use Jon’s stander?

It seemed feasible. But sadly, the required body test just doesn’t seem to accept Jon on the balance board, even with the stander. It constantly would say he was shifting too much and asking to reset itself. We’ve tried about ten times over two sessions. Sigh. Jon has taken the disappointment well enough, but clearly his feelings are hurt.

At the cottage, he kind-of-cheated and used Meghan’s profile, which worked out about as well as possible. Jon can’t wait for Meghan’s next visit to our house, so she can fake a body test for him (they are roughly the same weight, and that’s all we need.)

In the meantime, using Grandma and Tamo’s profile, Jon has discovered running in the Wii Fit’s virtual park. It is the one game on the Wii Fit that doesn’t use the balance board. Instead it measures your energy through the bouncing Wii Remote in your pocket while you run in place in your living room.

At first, Jon just shook the Wii Remote with his hand, creating a super-fast running character who disobeyed commands to slow down, and thus tripped a lot. But then I had another idea…and it worked. It’s a more intensive version of his MEDEK wall exercises, and Jon loves it. And it makes a nice complement to Jon’s activities in his new walker. It’s a little hard on me, but with his enthusiasm…Go Jon go!

In the meantime, Wii Fit development team: you need to tune the Balance Board to include the disabled. You probably have a few hundred thousand or more in Japan to work with, or feel free to invite us over for some testing! Jon will work for sashimi and tempura!

So last week was checkup week in the house, with me having two visits to St. Mike’s and Jon having a quick consultation with an oral surgeon in Whitby (when and if he does the tooth removals, he’ll do them at Sick Kids, but he likes to consult in his own office).

I’ll deal with Jon’s visit first, since it’s the easy one.

Fact: Jon’s progress on his baby teeth—or if your mail-order DDS diploma arrived today, deciduous teeth—is very slow. This is not a panic to us, as one of our nieces has this issue too, and everything is fine, just slower.

The orthodontist, Dr. Dagys, would like to remove Jon’s baby eye teeth (one per quadrant = 4) to give his front teeth a little room to spread out for a year or so, and gradually she’ll start her equipment magic.

The oral surgeon, Dr. Nish, thinks more removals are coming in the future, and that the eye teeth don’t buy too much more room. The removal of four teeth alone will require Jon to be anesthetized, and although anesthesia is relatively safe, there is always risk. Since he believes that Dr. Dagys is going to have him remove more teeth in the future, he feels that he should remove three teeth per quadrant (=12) in one fell swoop and Dr. Dagys can fit Jon with temporary dentures to fill the immense chewing surface gap. Mind you, Dr. Nish is a bit concerned by Jon’s late schedule, and admits that there’s a risk of Jon’s permanent teeth never emerging, despite their existence on x-rays.

Dr. Dagys has not told us about further removals, and when you combine that with the low, but real, risk of lack of the emergence of the permanent teeth, we think 12 at a time is a tad on the extreme side.

So we’re gonna let the two docs debate this one, and come back to us with a proposal that we can discuss. The nice thing is that both doctors are giving us a lot of the raw facts and their concerns, so we’ll be able to examine the new-and-improved proposed solution carefully.

Jon’s new walker has finally shown up. The delay wasn’t a supply issue, but rather a provincial co-funding issue, but I’ll rant about that another time.

It’s quite something to see Jon trying to surmount 11 years of not having to consider how to steer your body with your legs. Nothing in Jon’s experience has prepared him for a task like a U-turn, which is markedly different from anything he’s done before. On a therapeutic trike or wheelchair, it doesn’t require anything new from your legs: either they just sit there or they peddle, right? But a U-turn in a walker requires your legs to steer, perhaps cross-step, shifting weight while still keeping balance. Your brain has to make choices, and learn from mistakes. Muscles develop, and your strategies change.

This is the kind of thing you typically start to learn at 10 months or so, like our young buddy Rowan. Your butt is a full 12 inches from the ground, heavily padded by flesh and diaper and mistakes don’t cost much. And obviously, your legs grow strong as you wander more. It all fits together in a developmental ballet.

This is why many of Jon’s problems are referred to as “developmental delay”. Much of what he can’t or doesn’t do may be because of a lack of opportunity, due to low vision or other physical impediments that don’t allow him to take advantage of a relevant situation.

We’ll see how it goes. Yesterday evening, he proudly stood at the outdoor glass table and then reached forward to crank open the table umbrella. He’d never had that opportunity before. Developmental blocks shift and build. We’ll see how it will affect his footwork, his leg muscles, his hips, his posture…and his inquisitiveness…as we go.

(Go see the movie. Now.—L)

June 27/08

I saw the movie Wall- E. In the movie Wall-E there was Luxo. Wall-E’s girl friend is named Eve. I like the sounds that Wall-E makes. When Wall-E charged up it made the Mac bong. I really like the movie.

Jon