Monthly Archives: October 2009

Just one more thing

PeterLaura It’s been a while since we’ve had any new concerns about Jon to worry about, but after our latest appointment with his orthopedic surgeon, now we do. The latest x-rays reveal that Jon has scoliosis, a lateral curvature of the spine.

Skeletal distortion is not uncommon in people with cerebral palsy: because of damage in the nervous system, their muscles are often “turned on” constantly. (As a mental exercise, tense some of your muscles, then imagine that it’s a permanent condition. But it needn’t be so complete: perhaps it is just a section of muscle, or a fraction of the fibres in one particular area.) This constant muscular pressure can be intense enough, over time, to gradually distort bones. Jon already shows some skeletal distortion, primarily in his feet and legs. But there is something slighly unnerving about seeing this distortion in the spinal column, in black and white on the x-ray.

How exactly is Jon’s CP affecting his spine? If we run our hands along Jon’s spine it’s easily felt that there’s a bulge of muscle running down the spine on the left, but not on the right. The bulge is a regularly-innervated lateral band of muscle; the other side’s muscles reflect where those particular neurons got damaged at birth, so can’t be used to articulate those back muscles. And so they can never develop.

Gradually over time, a small section of strong muscle has pulled and twisted the lower vertebrae. According to the doctor, the scoliosis has been developing longer than its sudden appearance suggests. Those muscles have been tugging subtly behind the scenes for a while, too subtly to be seen in the past by physical observation. No doubt its dramatic entrance to the big time is due to the sudden adolescent growth spurts and the increased weight of his torso that has to be supported (as you grow two-dimensionally, your proportion of weight grows three-dimensionally).

So what’s to be done? Exercise is always good, and Jon certainly needs more than he’s been getting. We and our school physiotherapist are trying to get a number of things happening when he’s at school. But it won’t undo the curvature already present, and won’t realistically stop any increasing distortion. Braces have little effect on kids with CP, since the huge pressure on the vertebral column is internally generated and won’t be stopped by a mere brace. Jon’s spine curvature isn’t severe enough for surgery. So basically there isn’t really anything we can do other than watch and wait until his teenage growth spurt finishes. Only then will we be able to determine whether his scoliosis has grown severe enough to necessitate an operation or any other kind of intervention.

Just one more worry in the all-you-can-eat buffet of concerns that is Jon’s life.

The Boy in the Moon, revisited

Laura A couple of years ago we posted (here and here) about Globe and Mail writer Ian Brown’s heartbreaking series of articles about his severely disabled son, Walker. Although most of Walker’s disabilities are much more profound than anything we’ve encountered, Brown wrote about issues, feelings, and thoughts that had an eerie resonance with us.

Brown has now expanded the articles into a book, The Boy in the Moon: A Father’s Search for His Disabled Son. An excerpt was recently posted on the Globe‘s site. Again we saw a disquieting parallel with our own life, when Brown writes about his home’s storage of huge amounts of old supplies and equipment, kept just in case they might be needed again. Also, rooms filled with unused clothing and toys (given to Walker by well-meaning relatives) that the family can’t bear to get rid of.

We have shelves and toyboxes filled with wonderful toys given to us by friends and relatives over the years—stuffed animals, puzzle games, Lego sets, trucks—that we hoped would get lovingly used and destroyed by Jon. Unfortunately he never had much interest in plush toys, trucks or games; and lacked the manual and visual dexterity for Lego and puzzles. But we couldn’t bring ourselves to get rid of them, rationalizing that maybe, one day he’d want to play with them….

Old toys
One of several old toy depositories littered throughout our house

Revisiting the Kakapo

Peter Way back when we created our kids’ science book Born Smart? (yes we are getting back to updating it here, it’s been a busy year), we had a chapter called Problems with Instinct. One of the animals we talked about was the kakapo, a large, gorgeous, flightless parrot from New Zealand. We’ll let the pages below, currently in different states of restoration, expand on the kakapo’s problems.

Born Smart page 99

Born Smart page 100

Why do we bring this up now? Well, what initially brought the kakapo to our attention was the book Last Chance to See by Douglas Adams and Mark Carwardine. Almost 20 years later, Carwardine and Stephen Fry (in place of the late Mr. Adams) retraced their steps to see how or if some of the animals have coped since. The TV show is just out in Britain, and look! here’s an old friend very happy to see zoologist Carwardine! Oh so happy!