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.

We got back from the big trip three days ago and it’s taken us until now to wrap our heads around the past week enough so that we can write up a post.

To fill out what Peter obliquely mentioned in his Aug. 16 post, Jon got accepted into the Discovery program at the Easter Seals Merrywood camp near Ottawa earlier this year. This is a 5-day session for camp newbies (as opposed to the regular 10-day session), and the upper age limit was 12, so we figured that this year was now or never for Jon!

We were a bit trepidatious about sending Jon off on his own, and we certainly did our share of over-thinking the whole thing, which probably describes our whole life with Jon for the past 13 years. We’ve pretty much had to chart our own course with Jon, since no one else—not even health professionals—ever got a full handle on the scope and interactions of Jon’s challenges. But after 13 years of having never been away from Mom and Dad, it was time to start snipping away those apron strings.

Of course, when we saw the photo on the flyer postcard we received late last year it threw us for a loop for a bit:

All this talk about cutting strings suddenly makes us nervous…

Since we had been told by friends and neighbours—very firmly—not to come back home for the camp duration, but to have a real vacation, we decided to explore Montreal and Quebec City; cities far enough away from Jon and yet near enough for our comfort.

Sunday, Day 1

Camp Merrywood gates

We said goodbye to a glum Photon Sunday morning (a big thanks to friend David for house/dogsitting). Jon was in high spirits during the 5-hour drive to the camp. A new audiobook (Charlie and the Chocolate Factory—a favourite), a lunch stop at Swiss Chalet in Kingston, and even the family winning the top prize in our iPod version of Who Wants to be a Millionaire added up to a chipper Jon. Once at camp, the staff took us around for a tour of the facilities, which looked very satisfactory to us. The campers’ sleeping quarters are 3 air-conditioned buildings, each of which has 4 beds per room and two rooms each of boys and girls. When it came time for goodbyes, Jon suddenly became, not sad; very serious and sober. Grave. Which pulled considerably on the parental heartstrings!

Craft Hall at left; Meal Hall in centre; Jon’s “cabin” at right

By the time we got to Montreal we didn’t have a lot of time to do much more than check into our room (Hôtel du fort), take the Métro to wander around the rue St-Denis area and eat at Chez Doval, a homey Portugese restaurant. Food wasn’t fancy, but boy was it good! Peter had a grilled squid appetizer and red snapper; Laura had a roasted quail appetizer and a seafood casserole that contained the largest mound of lobster, clams, mussels, etc. on tomatoes and rice either of us had ever seen! No room for dessert.

Monday, Day 2

Checked out of hotel, picked up some bagels and lox from Fairmount‘s and headed out to Quebec City via the (so we were told) more scenic North route. It was okay, nothing special, except for a random exit from the highway to find a picnic spot, ending up at the little town Sainte-Geneviève-de-Batiscan for a very picturesque lunch.

(Mind you, the GPS got decidedly psychotic about the unscheduled pit stop!)

The spot where we ate lunch

Panorama of Batiscan river. Larger version

We got into Quebec City mid-afternoon, where we settled into our hotel, the charming Auberge de la place d’armes, right on rue Ste-Anne smack in the middle of Old Quebec. Our room was cozy and clean, with hand-made, slightly funky furniture, decent amenities (free wireless internet) and, unfortunately, a very noisy but working air conditioner. (The hotelier profusely apologized about the noise; it had broken the day before and although they called a repairman, so had everyone else with problems in this first big summer heatwave.)

We ate dinner at the hotel’s restaurant, Pain Béni, expecting a touristy French bistro. Instead we were pleasantly surprised to discover delightful, imaginative food. We actually ate dinner at Pain Béni both nights we were there, as well as both breakfasts (included in the hotel price), and all were excellent. (There are other good restaurants in Québec, but none we found in our wanderings. All the other restaurants we came upon catered to white-bread tastes: lots of beef, spaghetti, and when a posted menu read “hamburgeois”, we kept on walking…)

An half-eaten example of the imaginative desserts at Pain Béni: Olive-oil ice-cream with scoop of grapefruit granita, pralined pine-nuts, drizzled with a balsamic vinegar syrup. Yum!

At the end of the day we wandered around the lower city, trying unsuccessfully to find where the Robert Lepage projection show was being shown. We figured the show was cancelled due to the thunderstorms that evening.

Tuesday, Day 3

Upon reading the tourist information in our hotel room we found out that the Lepage installation runs every day during the summer, rain or shine—except on Mondays and Tuesdays. Dang. But what a show it seems to be, projected on 80 grain silos in the harbour, the size of 25 IMAX screens.

Off to tour the Citadelle, where we watched the changing of the guard, petted the regimental goat, and generally roasted in the heat (though with the humidity so high it was probably more a slow braise.)

Batisse, the regimental goat during the changing of the guard—how veddy British

Batisse’s golden horns. Peter’s thinking of getting his ears done this way.

Lots of walking around various streets of Quebec, eating lots of gelato, buying chocolate, and generally doing the tourist thing.

View of the St. Lawrence River from the Citadelle. Larger version

Wednesday, Day 4

After check-out we decided to take a side-trip to Baie-St-Paul to wander, enjoy the little artist community and see an exhibit of costumes from Cirque du Soleil at the Musée d’art contemporain (B-S-P is where Cirque got its start).

Finally, a highway with some pretty countryside! Lovely rolling farmland inscribed by long thin rectangles, and steeper, wooded hills heading 3/4 km above sea level.

Rolling hills on the way to Baie-St-Paul

Nice costume exhibit, some lunch at a local bistro and back to Montreal via the snore-inducing South route.

Our room at the Hôtel du fort was upgraded to a suite and free wireless; we suspect that they over-booked. Dinner was at l’Éxpress, another French bistro, but this one a superlative one. We had previously made reservations, which is de rigueur because the place was packed to the gills on a Wednesday night. People were still waiting at the bar for tables at 10:45 at night. (BTW, thanks to Marie-Louise for both of our Montréal restaurant recommendations!)

Thursday, Day 5

Check-out and off to the Musée de beaux-arts to see the Frédéric Back exhibit. Loaded up on more bagels, chocolatines and croissants aux amandes, then off to Ann and David’s in Ottawa for another scrumptious French-influenced dinner (a lovely duck confit), with Kevin and Heawon and Clay and Taeyun joining us. The interests of our friends and relations gelled so perfectly that while they chatted, Laura and I secretly joked about heading back to T.O. a day early! Thanks so much to Ann and David for their hospitality, food and lodgings too!

Friday, Pick up

Jon and his camp counsellors

Up early to pick up Jon from camp. Jon was very pleased to see us (BIG hugs), but was clearly happy as a clam at camp. On the car trip home he alternately watched his DVDs and listened to Chocolate Factory, but was even chattier than usual, talking very excitedly and loudly about anything and everything: TV shows, camp activities, lunch, DVDs, etc.; he was absolutely bubbling over with excitement.

What Jon looked like most of the way home

On his “Camper Experience Form” the counsellors noted that Jon was an enthusiastic participant in all the camp activities, co-operative and friendly, “and has a fantastic smile.” The fact that camp agreed so well with Jon is a HUGE relief to us. The first apron strings have been successfully cut, and this is maybe a good sign of future steps to independence. At the very least, it’s looking great for another (10-day) session at Camp Merrywood next summer.

By the way, we never did properly say thanks to everyone for their kind blog comments and other interesting real-life visits, distractions, donut holes, cards, and baskets. Each and every one of them was very kind, and all took us out of the inevitable rut that you get into when one of you is recuperating in something invented by the Spanish Inquisition. Particularly brave were the ones who girded plenty of loins to visit us at the hospital: Andy, Christine, Richard, Luisa, Grandpa S. and Tami. Thank you all.

Well, here goes Jon’s third major surgery, almost eight months to the day of his second one. The operation starts this morning at 8 a.m. at Sick Kids, but of course that means we’ve been at the hospital since 6 a.m. (in part making sure the kid isn’t tempted to eat or drink anything right before the surgery.) Surgery is estimated to last five or six hours. For details on what’s being done, read about Jon’s first operation from six years ago (start at the bottom of the page), and pretend it reads “left leg/hip”.

There was a bit of tension when Jon got winged by whatever virus is going around just before the March Break. You have to be healthy to go into surgery. He shook all of the symptoms easily, save for some sinus congestion that just…kept…holding…on. But he’s mostly better, and the anaesthesiologists say that this is minor and not an impediment.

Huge thanks to Pam who is dogsitting at our place throughout the day and trying to ensure that poor Photon won’t go too mental.