Thursday, January 01, 2015

Happy New Year!

Of course these too-infrequent blog entries must always begin with a little self-laceration, because it kills me when I see how long it's been between updates, so let's just get that part over with, shall we? Deeply felt thanks and apologies to anyone who has been thinking of Callum and checking in here hoping for news ... I think last year I made a resolution to keep this more frequently updated. Guess I'll re-resolve that one for 2015. 2014 was overall a good year for Cal. His surgery and recovery went so much better than it did in 2013, and the first half of third grade has been generally really good - great new homeroom teacher, wonderful new one-on-one helper (hello Marlena), continued commitment, flexibility, and excellence from the teachers and staff we already knew at Chatsworth, lots of sunshine and open space in the classroom (it matters!), great grades and academic progress, without too much in the way of serious illness (and we've been able to avoid hospitalizations and deal with it at home when Cal has been sick). Knocking on wood as always. It took my breath away a little to see him start this school year with a real surge of confidence. I guess it's an age thing, but at the end of last year he seemed subdued and somewhat ambivalent about school, whereas this year he has been on fire since day one. An exciting difference and one that I guess no single factor can really explain. Last year he ended up appointing himself school safety patrol, a self-conferred authority role which put him more in league with grownups around him and meant that he was constantly reminding other kids not to run in the hall, etc ... cool in some ways, but also a little worrying for a parent - at times he was quite a little narc! - this year he has been treating his peers much more like peers, which is encouraging. He's also been impressively forthright in his encounters with people who don't know how to approach him because of his obvious differences. We are so proud of him, in all things of course but especially in this. We were also lucky to find, through our REM caseworker, a great new PT who accepts our insurance and will work with Cal at the house. Since the surgery in June, the biggest news is that in July we went to Kennedy Krieger to look at a new power chair for Cal, as he's really outgrown the one he currently uses. It takes an age for all the red tape to clear, so we're still waiting for it to arrive 6 months later, but we're all really excited about it. The new chair is a Permobil M300, which will add vertical movement into the mix, so Cal can move up and down to be at eye level with his peers (in his current chair he is always a little bit above and apart, which is not ideal). Cal will also be in total control of this one: speeds, incline, even on and off - all of which are parent controls, not accessible to him on his current chair. Now all we have to do is actually GET the thing.
Other highlights from 2014 included trips out to Sugarloaf Mountain, the Maryland Science Center, Fort McHenry, and the inauguration of what we hope will be a family tradition: a Fall camping trip to Cape Henlopen DE.
A lot of Callum's time is spent on his computer (Minecraft, with all its many mods, has been the main obsession for months, but he is generally game-crazy as any kid his age ... OK, probably more game-crazy). Janet and I have been following some SMA support groups and people are always comparing notes about assistive tech, and all the challenges of access to regular kid stuff that the able-bodied take for granted ... like many, we had high hopes for the iPad, but in the end a desktop Mac mini has been his best resource, with a switch interface for clicking, and a Kensington trackball mouse. The wireless Mac keyboard has a light enough response that he can use it, and he's become really adept at reconfiguring game controls to the keys that are easily within his reach. We finally got Dragon Dictation installed on his Mac so he can do homework assignments by voice rather than hunt-and-peck on the onscreen keyboard, or with one of us transcribing for him. He gets annoyed at Dragon pretty quickly when it transcribes incorrectly, but we've been making progress and it's wild to see Dragon "learning" Cal as he gets more comfortable with it. He's also been doing a little drawing with Sketchbook Express. We can also get e-Books from the school library and the Baltimore County public library ... but it's a hard slog to get any 8-year-old to read from his computer screen when he could be using that computer to launch rockets in Kerbal Space Program instead. Cal turns 9 in a couple of weeks. And we go onward into 2015, thankful for every day.

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

Metamorphosis



"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!