Thursday, July 18, 2013

A few photos

Just a brief note to say Callum's recovery has been nothing short of amazing. What a great Summer we are all having! It's wonderful to have him back, and we can really see the benefit he's getting from the growing rods: his voice is louder, he's taking deeper breaths, and having a more stable frame seems to be giving him a little more strength in his arms. Mostly great that his joie de vivre and energy are back in full force. We are really looking forward to finally getting him out to see some live music this Summer/Fall, since so many of our friends are playing at the many outdoor festivals coming up. This kid needs to rock!

Tuesday, June 25, 2013

He's Back!

Was the past week just a weird dream? It flew by and everything went so smoothly ... And now Callum will complete his recovery at home. How great to be on the other side of spinal surgery.

Sunday, June 23, 2013


"With all these wires and blood from another person, I may become something new: a robot lizard that will walk on 2 legs and shoot from its hands with detonators.
With all these wires, my mutation could be completed in a day or two."

That's our boy!

Wednesday, June 19, 2013

True Metal

Before ...

And after.

And here we are, in the PICU at the new Hopkins children's center.

Right now Callum is sleeping through a Star Wars marathon that we only keep running because we're afraid the sudden silence might wake him. And despite a lot of  pain medication, he's been stubbornly wakeful all day, since emerging from surgery at around 12:30.
The doctors report the procedure went pretty much exactly as planned, and Cal has been a total trooper throughout.
The anesthesiologists were kind enough to let both me and Janet stand at Cal's bedside when they put him under. What a great team - they were chatting with Cal all the way into the operating room and he was chatting right back.
Cal: "do you have a computer in the operating room?"
Doctor: "We have three."
Cal: "I think I'm going to like this surgery!"
Committing to this surgery - emotionally - has been one of the hardest decisions yet in our SMA journey, but we've never doubted its necessity, and we've never doubted that in Dr. Sponseller's team we were going to the best people to do this job. And I don't think we've ever doubted that Callum was up to this ... just worried at the thought of putting him through anything more painful or dangerous than what he's already up against. But at the end of day one, I think we're all feeling mostly relief and resolve ... and optimism.
Tomorrow morning, if all goes as planned, his breathing tube will come out and he'll really start on the journey of recovery by taking over the work of breathing for himself, and hopefully eating some real food. We've managed pretty effective communication today with just eye wiggles and blinks, but a day without Callum's voice is a long day indeed. Tomorrow we hope to have it back.
Our deepest gratitude to all who are keeping him in their thoughts.

Tuesday, June 18, 2013

On the eve of Callum's surgery ...

We are getting things together for the hospital stay. Callum's surgery is scheduled for 7:30 AM tomorrow, which means we need to be up at 4AM to get to the hospital 2 hours before start time. Janet and I are doing a pretty good job (though I say so myself) of keeping it cool, despite carrying a lot of stress ... somewhere? Floating around our heads like a grey cloud? I don't know. Callum seems in good spirits. He knows what's up as much as he can at age 7, and he seems really positive. Every now and then he asserts quite authoritatively that there's an alternative to spinal surgery, so we can cancel the procedure ... but today he's mostly been excited to pack, choosing books and DVDs and toys to bring, insisting on helping to carry things from one room to the next in his power chair. Really, knowing there's no alternative, and knowing we're in extremely capable hands, doesn't make this exactly easy, but it does bring with it a certain peaceful resolve to go forward with a positive attitude. There's lots of other news; for example, 1st grade has come to a successful close ... but I can't really concentrate on that stuff right now. Maybe there will be time for a more complete update in the near future. Thanks to our wonderful, supportive friends, and to all who continue to keep Callum in their thoughts.

Tuesday, April 09, 2013

Instant Summer. Sigh. It was not an easy Winter, it held on and held on and way overstayed its welcome, but we got through it and strangely none of us seems much the worse for it. Lots of colds threatening (but only once delivering) the onset of pneumonia; a brief hospital stay before Christmas; and the news that spinal surgery is now officially an urgent necessity (to correct Cal's scoliosis before it starts to threaten his lung capacity). And all of a sudden it's 80 degrees outside and swampy Maryland Summer is upon us when just last week we were burning through the firewood at a record pace. The surgery - to implant segmented metal "growing rods" which will straighten the curvature of Cal's spine - is really the thing that looms over the coming Summer months. It's scheduled for June 19, the first day of Summer vacation. If the surgery and recovery all go as well as they might, then we will have a much taller Callum, with a much straighter back, no back pain, and greatly improved respiratory function, by the time school starts up again in the Fall. In the interim, well .. Summer, yes, but we are not anticipating anything like a vacation. Meanwhile, Cal is still a fantastic kid, and every day with him is cooler than the one before. To go into specifics right now would be to never know when to end, so ,,, it's not time to start. We are still here, thought I'd write a little note to say so. Very best to anyone who's checking in.

Tuesday, January 29, 2013

1.29.2013 hello this is Callum. i love the world. The day before yesterday was my birthday. It was amazing! On my next Sunday birthday I would like you to all come. Love, Callum (first lines typed by Cal via on-screen keyboard, the rest by dictation)