Sunday, January 28, 2018

Happy Birthday

Today Callum is one day into his 13th year on planet Earth. He had a good day yesterday, celebrating his 12th birthday with presents, a movie out at a fancy "VIP seating" theater (Maze Runner 3: The Death Cure), and dinner and cake with his oldest friends, two sets of twins whose parents are old and great friends of ours. It's so awesome to see Cal with these great kids, all of whom have grown up with each other. The fact he's in a powerchair, with his activity constrained in the ways it is - it's just a fact of life for them, they got past the difference forever ago and it's never stopped them seeing him as a person, an equal, a friend. It really was a great day.
All week long, leading up to the day, Cal was talking about how he's "officially entering puberty" on Saturday. This matter-of-fact statement was cracking us up, but there's also a bittersweet side to it: he is getting older and if he's not quite left behind the things that made his younger childhood a beautiful thing to experience ... well, it won't be too long. Though we are proud of and continually amazed by the young man that's emerging. So glad he is still with us and stronger than ever.
Middle School is not great for anyone - we are reminded of this in literally every conversation we have with anyone on the subject - and so far that's certainly true for Cal. 1200 kids flailing their way into puberty together ... shudder. But there are highlights; his new classroom helper is our old friend Brandon, who, as a student, did OT work with Cal a few years back. It's so important to have someone in that spot who cares about Cal and is on his side. And Cal loves his Engineering class, where he's learning to use a 3-D printer among other skills ... and he has made his way into the calmer and more focused environment of a gifted and talented English class. Before that happened, there were plenty of times when 6th grade seemed mostly like a struggle against chaos, where a good day was one with the least anarchy in the classroom and the teachers survived with their sanity somewhat intact. There's still a bit of that, but moving to G&T English helped immensely. I think he has good teachers, and they recognize his intelligence, and that he has a lot to contribute, but they are fighting to make any positive impact on overcrowded classes in a deeply dysfunctional system. We are so lucky that he's been able to continue with the same tutor over the past few years for the at-home part of his school days. He does care a lot about learning, and has been keeping up good grades ... so school may not be ideal, but it's going about as well as it can. Which I think is true for a lot of kids in Middle School.
The biggest news for Cal is that there is now a FDA-approved drug to treat SMA: Spinraza. The price tag is insanely high, but thanks to great timing on the part of Cal's neurologist Dr. Crawford, we were able to get Cal into a free drug program sponsored by the company that makes the drug. Beyond the cost, there's also the logistics of administering the drug - it's given by lumbar puncture, and after 4 "loading doses" given quite close together, he will have to have it 3 times a year for the rest of his life. That's 3 lumbar punctures per year, forever. For the initial injection, Cal actually first needed a small surgery, a laminectomy, to make a window into one of his vertebrae so they could reach the spinal cord to administer the drug. For kids much younger than Cal, 6-month old Type 1 children who have just been diagnosed, Spinraza is literally a miracle drug. Some of these very young children go quickly from a state of total impairment, to hitting all the milestones expected of an able-bodied child - it's as if they simply didn't have SMA. For Cal, who had 10+ years of severe disability before this drug was even available, the results are less clear. We have noted very small changes in his mobility, which are wonderful to see. When he can wiggle a foot in a way he couldn't before, or we can feel that the pincer grip between his thumb and his hand is a little stronger, it's an indescribable feeling. But we are also good at managing our expectations; nothing in this has made him (or is likely to make him) any more self-sufficient. However, we are told that as long as he receives this drug, the degenerative part of SMA - the specter of things getting worse - will be kept at bay, and that is a source of tremendous relief. And we can also hope a little for the future; in 2006 when Cal was diagnosed, this drug was only a concept in someone's notebook, a dream the realization of which we were told Cal would not likely live to see. We're lucky to live in a time when changes like this happen more and more rapidly, and there are other possibilities for SMA on the horizon.
Thanks to all who continue to check in on this blog, even though it seems to have turned into an annual thing ... thanks for keeping Cal in your thoughts.

Tuesday, January 17, 2017

World of Peace

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

Springtrap 2488

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.
Thanks to any and all who spare a thought for us and Cal, and who take the time to check in here.

Sunday, September 27, 2015

Living in the Future

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

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.