Friday, June 20, 2014

Wednesday, June 18, 2014

On The Floor

As in: out of the PICU and up to the recovery rooms. So, that's good news. Callum is doing great, and although he's pretty moody and surly with Janet and myself, he's "up" and chatty with the hospital staff, and discussing his case like a grown-up. Really hoping his recovery continues in this vein. He's got TV eyes at the best of times, but hospital stays are a total TV OD, despite our best efforts to insert books and conversation into the proceedings. Maybe that's why he doesn't seem especially eager to get home; where else but the hospital can he indulge his TV obsession with total freedom? One perk of his new room is that he has a clear view of the hospital's helipad, his first view of which (featuring a departing helicopter) brought a loud and sincere "wow." So that's one thing from real life that eclipses the action on the Box. But the main thing is that he seems to be doing really well. Hoping we'll be back home tomorrow or the next day. Thanks to everyone who is sending well wishes and positive vibes.

Tuesday, June 17, 2014

It's Spine Time again ...

Summer is here again, and that means ... time to extend the titanium rods which were attached to Callum’s spine last year. We left the house this morning at 4:45 AM, headed down to Hopkins, and by noon Cal was out of the OR. So far the whole thing has been as mellow a scene as spinal surgery can be (but don’t forget to just roll that sentence around your brain for a bit). We were all so stressed leading up to this, but the procedure went very smoothly and now we just have to get through what Cal's specialists seem to think will be a shorter, simpler recovery time. Cal was more anxious leading up to this than he was before last year’s procedure, but overall has handled it like a champ. At age 8 he is showing an ever-greater awareness of his situation and how SMA makes his life different from that of others around him, and I don’t know which we’re more proud of: his general ability to rise above, or his forthrightness in expressing his emotions when he’s down. There’s a lot of catching up to do on this blog - apologies for that - but forgive me if I don’t go there right now. There should be time to do that this week, as Janet and I take time out from work to be here for Cal’s recovery. For the moment, we're still at Hopkins and hoping that everything continues to go smoothly.

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.