We haven’t even blogged about Jon’s fun at various day camps and already he’s back from his 10-day overnighter at Easter Seals Camp! Until we get that blogged—we’re still awaiting images (long story)—what we can say is he had a great time and it’s a well-deserving charity, folks.

He was picked up looking scruffy and tanned, as you can see:

Before:

After:

Peter’s milquetoast against Jon’s rugged tan.

I apologize for our lack of blogging. Things have been busy—not nearly busy as we’d like in the freelance world, but that means trying to come up with new projects and getting them going, while keeping all the other balls in the air. Anyway, to the blogging at hand. Here’s a little thing that developed through March, April and May.

Jon doing elementary backstroke with his instructor. He’s becoming a stronger swimmer–Note: no floaties!

Jon goes to swimming lessons at Holland Bloorview Kids Rehab Hospital at various times during the weekends, depending on which class time we manage to get via the lottery. We pretty much always follow the same routine: While getting ready to swim doesn’t take too much longer than for most kids, getting dressed again does. Jon’s usually the only kid at his scheduled time who’s wearing orthotics and in a wheelchair. (Yes, Bloorview is nominally for disabled kids, but not all kids with disabilities are confined to wheelchairs, and to boot the pool & recreation programs are integrated with regular kids in the community.)

So when it’s time to go, we’re usually the last ones out. And what with getting all of Jon’s gear packed up, he usually gets a head start on me out the door. Sure he’s a bit tired, having just done 30 minutes of work in the pool, and he may have to dodge other people in the tight surroundings of the changeroom doorway. But once he gets out of the changeroom, it’s a wide-open space to the elevators back up to the lobby. And what with his new school and hormonal teenage attitude, he’s got a little more confidence: He makes a break for the elevators. And if he gets lucky, in the 20 or 30 seconds it takes me to pack up, he’s found himself a ready elevator and he leaves without me.

It’s happened four or five times now, and he’s pretty much figured it out. By the time I get to the main floor, he’s waiting for me, or just getting out (I tend to be moving fast by that point; he’s in less of a hurry). There has been one time that I got to the main floor and he wasn’t there; I waited about 45 seconds before an elevator opened and voila, there he was. I figure his delay was probably that he didn’t press the elevator floor button hard enough. But who knows? Maybe he went on a reasonable short adventure. We can’t begrudge any teenager that.

Jon’s braces began yesterday. What more to say? (Hint: I’ll find something)

Post-orthodontic casting, Jon thinks he’s Bono!

He wasn’t used to a lip protector, which held his mouth open abnormally wide.
Aside from a couple of short bouts of quick-breathing—not quite to the point of hyperventilating—he stayed calm and got through it just reasonably well. Nothing like the time he had a filling put in, and then replaced some months later, to correct previous errors. Both those times he turned into a BEAST. Seriously feral.)

Break time. Some of the anchors are bonded, but no bumpers or wires yet.

At the end of the three hours.

We’re due in next week to complete the top set—a couple more back anchors and a pair of bands on the back teeth. Meanwhile today, the morning after, Jon wasn’t exactly delighted to wake up with them. Nor with the cheery dad saying “Nope, they’ll be on your teeth for a couple of years, probably. I had mine on for longer.” He remained disgruntled. Heck, I didn’t even tell him about the crazy headgear I had to have!

Warning: Contains X-rays of spines and hips and if you know what you’re looking for, even some intestines filled with what intestines are filled with. Yup, that stuff.

In other news, according to Jon’s orthopaedic surgeon it’s the end of an era for Jon’s hips. Jon was recently examined for both the state of his hips (the first surgery for which started this blog so many years ago) and his more recently-occurring scoliosis. The scoliosis is now the major concern, as he still has a couple years of potential growing to do, and we need to keep watch to see if any surgery might yet be required. His spine has curved ever so slightly more this year, 15 months since his last x-ray, but not enough to set the surgeon into action.

Mind you, we’ve already been in to contact with our wheelchair vendor and Jon’s board-assigned occupational therapist to get them alter some aspects of his wheelchair. Due to bad timing, this latest chair arrived during the summer of 2010, and his previous occupational therapist and vendor rep changed when he arrived at his high school, so there was no continuity to ensure that what they had originally recommended nine months before was working—and as it turns out, some of the new touches weren’t appropriate. (We understand this aspect; every individual with CP has unique issues, and what works for one will not necessarily work for others. Therefore, more attention is needed.) And now, with a second school move, we’ll be changing therapists again. So we’ll have to stay proactive on this one.

But in end-of-an-era news, Jon’s hips got their final major x-ray. The hip’s growth plates are now fused, so there’s little likelihood for the metal hardware buried inside his femurs to shift. Both the pelvis and the femurs look good, have finished growing nicely since his most recent surgeries of five years ago. And with that, this particular worry in life is over. Any further growth will be in his legs or his torso (adding more strain to his back). So while the hips fade away in concern, we must be vigilant about his back (as much as we can, in any case)

Let’s take a tour down Hip-storical Avenue, shall we?

(pun copyright ©2012 Peter Cook)

2001

Before

As we’ve said before, femurs don’t grow bent, they and the hip socket grow and develop that way by the toddler owner running around on them. Jon didn’t stand or run enough, so they never could set properly.

Surgeon Plans

This is the surgeon’s quick sketch of his plans (made for inquiring parents. Notice the number of IKEA standard parts is reasonably low.)

Post-Op

Afterwords. It looks a little drastic at this point, but notice the cool rebuild.

…And 6 weeks later

It’s all looking way better. At this point, all concerned had hoped that Jon could have enough physiotherapy to achieve proper development in time. (Note: that was about the time Mike Harris took over Ontario, introduced massive cutbacks in education and instituted that physiotherapists for special needs kids could only advise—no hands-on therapy. Jon’s school had 5 or 6 therapists, and after his first year they could no longer directly participate in the their physical therapy.)

The intervening five years were a bit of a blur hip-checkup-wise, but at some point we were offered the chance to go to Bloorview MacMillan to get Jon’s X-ray instead Sick Kid’s orthopaedic clinic (imagine 30-40 folks in one room, milling staff, long lineups for X-rays, etc.). We were told that each X-ray taken was forwarded to Sick Kid’s for examination by our surgeon, but somewhere along the way, be it before or after we were assigned a different surgeon, the X-rays just stopped getting to where they had to get to, and Jon’s growth was shifting the blade plate…

2006

The Leg Break

It won’t go into the detail of the break-on-vacation, the misdiagnosis by Vancouver Children’s Hospital, or the eventual-but-delayed surgery at Sick Kids in Toronto…

…but to say that Jon’s right leg was repaired, and it became clear via the X-rays that it was time do his other one too. They did that about six months later.

2007

Late 2011

And here we are. In shots like this, remember that you are viewing it three-dimensionally so that the upper part of the “L-Bracket”, called the blade plate, is entirely embedded in the bone. Nothing is jutting out. The side portion of the bracket is on the outside, affixed by screws.

So that’s it for Jon’s physionogmy for a while. Let’s hope! 🙂