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.