Tuesday, January 17, 2017
It's been forever! Again. While it would be easy, on the eve of the inauguration, to go into a downward spiral, there isn't enough time or energy for it. Here are some great positives from the past few months. Number one, there is finally an FDA-approved treatment for SMA. Of course the situation on the ground is more complicated than just this seemingly excellent good news; the drug Spinraza does not reverse losses that have already occurred, only stave off future ones. It's administered via lumbar puncture several times in rapid succession in the first year and then 4 times per year for the rest of the patient's life (that's right, 4 lumbar punctures annually - bit of a "quality of life" question?), and the price tag is hundreds of thousands of dollars per treatment. Medical Assistance (which is our insurer) will never cover it, at least not in MD, where Federal Medicaid money is in the form of the ever-popular block grant ... and of course, who knows what the future holds for us all in this regard). So it's not exactly "throwing your hat in the air" time. But it's forward movement, and there are other promising approaches in the pipeline which may be even better. I think the main reason to be excited is that this all happened so quickly. It gives a lot of hope for better approaches to develop just as quickly. But back to the day-to-day, since that is where we live. 5th grade is a bit more challenging for Callum and for us - lots of work, kids are older and their behavior and interactions are changing as they grow up. The specter of bullying and exclusion have entered the picture, classroom aides for Cal have come and gone ... more and more we've been feeling just how much of Cal's education is really up to us even if the school system is acting at peak efficiency on its best intentions. Which I guess we knew all along. We have so many reasons to be proud of him this year though - he doesn't shy away from confronting the challenges, even when it's upsetting for him to do so. It's a great sign that he is cultivating the skills he will need in a world that will be ever-ready to sideline him. The brightest spot in the school picture is that the new band teacher, Mrs. Goldman, when learning of Cal's ambitions to participate in the school band, offered to give him music theory lessons so that even though he's physically incapable of playing an instrument, he can write a piece for the other kids to play at the school's spring concert. The Chatsworth winter concert saw the public debut of his first composition, "World of Peace," played from Finale Notepad on his laptop. Finale has given him his first opportunity to experience the kind of real-time instant creative feedback that able-bodied people take for granted, especially as kids - he taps a note on the staff and he instantly hears the note, he moves it up and down the staff and he hears the different pitches; he inputs 4 bars of music and he can hear it back instantly. It's a great gift to have a teacher who can make this kind of learning opportunity for Cal by thinking just a little bit out of the box. We've been enjoying family reading time every morning over breakfast, mostly with Janet as the reader, but sometimes taking turns. Titles we've especially enjoyed: "Number the Stars" by Lois Lowry "The War That Saved my Life" by Kimberley Brubaker Bradley "Took" by Mary Downing Hahn "Serafina and the Black Cloak" by Robert Beatty I'll end for now with my usual empty promises to update this thing more often. We shall see! Thanks as ever to anyone who checks in on us or spares a thought for Cal, and solidarity with all who are facing a future so suddenly filled with more uncertainty.
Tuesday, June 07, 2016
Cal's got a YouTube channel now! After all, what self-styled gamer would be without a YouTube channel? https://www.youtube.com/channel/UC0t9uNT-tfgzw6RBxy3lY4g It's mostly video capture from the Isle, his favorite dinosaur game on Steam, which he and I have worked together to edit into little stories and make more dramatic by adding soundtrack music. But he's also been teaching himself to use Source Filmmaker, an animation program that's available for free on Steam, and today he posted a teaser for his first animation: https://www.youtube.com/watch?v=sm5UFffk4Wc It's really exciting for Janet and me on so many levels; last year Cal started a Minecraft mod class online, but he quickly lost interest in it. I think he was just too young to really sink his teeth into it and be persistent. But now, with SFM, he's really driven. Last week he literally had no idea how to use this software, and he has been digging into it with such intensity (no patience for tutorials, much like his parents), learning by trial and error and making real progress ... to see him focus and be able to work like this (and a lot of his work can be actually independent because of the way the software works), to be creative and see his ideas come back at him ... from one day to the next has been fascinating to watch, between his excitement at making any progress at all on the first day, to his disappointment on the second day when he scrapped a bunch of work he didn't like, to rebounding on the third day, and just his overall absorption in the process. Constant exposure to FNAF, its creepy and ever-expanding world of imitations, and its auto-tuned-to-hell-and-back soundtrack, are all a small price to pay to see Cal so creatively engaged and so fulfilled. Otherwise, since last update, things have honestly been pretty good. The "magic rod" extensions have continued to go off without a hitch. He is huge now: 54" long and 62 pounds. School has been great overall. His grades are really good, he has really blossomed socially and he gets along so well with the kids in his class. He has a best friend now, Allyn, who comes over to the house to game with him on his computer. There are even two really good music teachers who have worked to make their classes as inclusive as possible for him. The flexibility and support we've had from Cal's elementary school has been awesome, and we've needed it, because we did have about 3 and a half months, from February to mid-May, where Cal was not able to get to school at all. He had outgrown the back support of his power chair, so it literally hurt him to be in the power chair for longer than 10 minutes. It took an age for the various bureaucracies to get into gear to approve and requisition a replacement, and in the meantime we just did all Cal's classwork at home. This actually turned out to have a significant upside, because we all got really involved in his education even more than we ever had before, and it was mostly really fun. We read so many great books together this Winter and Spring, both those we chose ( The Shadow Dragons by James Owen, The Long Walk to Water by Linda Sue Park, Hatchet by Gary Paulsen), and the required reading in his 4th grade curriculum. Janet and I also think that being out of school in the winter was probably a big factor in him passing the season without a single cold. It's impossible to convey what a gift that was.
Sunday, September 27, 2015
Callum and I were talking about the Singularity a couple of weeks ago - the idea that the world a few years from now may be virtually unrecognizable to us, that there is a future we literally can't imagine coming our way quite soon. I love talking about this kind of stuff with him, because he's always up for the discussion. I think that conversation grew from talking about the new "magic" growing rods that were implanted in his spine in June. We had been prepared for Cal to go through serious spinal surgery every June for the rest of his youth, since his severe scoliosis required these titanium rods be attached to his spine, and then lengthened every year as he grew. But sometime in the past year, a new technology went from being experimental to commonplace: growing rods that could be adjusted magnetically from outside the body, in an outpatient procedure rather than an insanely expensive and risky full surgery. And so this Summer's spinal surgery was not a lengthening (or "distraction" as they call it), but an actual replacement. Callum now has the Magic Rods, and he won't need another surgery for at least three years. His first outpatient extension procedure will happen in mid-October. This experience - seeing a new approach become the standard within months of our even hearing of its existence - is something that's going to stay with us. Because it's a concrete example of how things can actually change for the better in an arena where so recently there was so little hope for things to even be just okay. Our times may often seem like the most insane, fraught, uncertain times in the history of the world, but the pace of change and innovation is also cause for hope. There are plenty of reasons to ask yourself why you'd bring a child into a world as crazy as this, but there are also a lot of reasons I can say I'm glad these are the times Callum was born into. 2015 has had plenty more little every day stories, more commonplace changes. Cal is too big to fit into the bath now, so he has to have showers in his bath chair ... he started the Youth Digital "Minecraft Mod" class this Summer (but seems to have lost patience with it - I haven't seen him on there in a while) ... 4th Grade has begun, with all the little challenges of adjusting to a new school year ... we redecorated his room in many shades of green (his choice) ... he's started referring to himself as "a Gamer," part of "the Gaming Community" ... he has friends on Steam who live in Bulgaria and South Korea. Unfortunately, Five Nights at Freddie's has supplanted Minecraft as his main gaming obsession, but these things do come and go, so we have to just roll with it. Callum is such a great storyteller at the moment. Many mornings he'll say "I had the craziest dream!" and then out comes an endlessly developing narrative that couldn't possibly be contained in a week of constant dreaming, often with invitations to participate ("do you want to do a little voice-acting in this story?"). Unfortunately it has so far proven impossible to convince him to write any of this down. Same goes for his inventions: robotic valets, leg-massagers, and power-chair maintenance robots among many others. Plans he will never ever commit to paper or computer file, mostly I think because Dragon Dictation still doesn't understand how to accurately translate his speech into text, and Sketchbook Express just doesn't seem to appeal. We went to see the Baltimore Symphony Orchestra's John Williams Tribute concert this Summer - JW is always a big favorite for Cal musically, he was pretty psyched to see the music happening in real time in front of him on that giant scale ... disappointed that the Star Wars Imperial March wasn't in the program though. But he got fist bumps from the Storm Trooper and other Star Wars characters they had milling around the symphony hall, so that sort of balanced it out. Pilot to Gunner is his favorite band, any band of mine has to settle for second place, always under threat from Killing Joke in close third (as long as we're talking about the more evil or high-energy side of KJ - no time for dubs or major-key anthems). Sure a lot of this is environmental, but we'll embrace it against a horrible but no less possible future filled with gangsta rap. He is getting so big - last time he was weighed, before his surgery, he was 51 pounds. I'm sure he's gained some since then. I don't like to think about lifting 100-pound Callum ... but that's for the future - hopefully that falls under the Singularity as well (hoverchairs anyone?). Sincerely grateful as always to anyone who tunes in to this blog, and with apologies as always for not making it a more regular thing.
Thursday, January 01, 2015
Wednesday, June 18, 2014
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
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.