my last entry), and in the process, I learned a few things. Part of that came from research I did, both online and with the help of Dana, who remains one of my best friends even from Connecticut. I also wrote to the two top experts on Schuyler's disorder: Dr. William Dobyns, who saw Schuyler in Chicago back in January 2005, and the Christopher Walsh Laboratory at Harvard. They both wrote me back with a ton of information, much of which appears to be in English but is clearly written for someone smarter than myself.
I have to admit that it had been a while since I'd done any serious reading on the subject, so in just the past week I've learned some interesting things about CBPS, the most obvious being that it is apparently no longer called CBPS. I'm not sure why the name has changed, although I suspect it is to bring it inline with the naming scheme for all the other forms of polymicrogyria. So goodbye, Congenital Bilateral Perisylvian Syndrome, and not so nice to meet you, Bilateral Perisylvian Polymicrogyria.
When Schuyler was first diagnosed, CBPS (BPP, I have to make myself use that now) was believed to be genetic in cause, which was the reason we made the sad decision not to have any more kids. Now it is believed to have a number of causes, including poor blood supply during early pregnancy and also the mis-development of blood vessels. Interestingly, one of the polymicrogyria genes appears to be a dyslexia gene as well.
I'm sure there's more that I haven't gotten to yet; the hefty texts that Dr. Dobyns and Dr. Walsh's lab sent would be daunting enough on size alone, even if they weren't written in Martian. I'll share anything else that jumps out.
This past Saturday, while having what was eventually to become one of the very worst days I have ever had, I very accidentally stumbled across something that sounded interesting and of possible interest to Schuyler: a therapy process called Interactive Metronome. And when I say I found it accidentally, I'm not kidding. The company was having a conference in the room next door to a wedding reception I was shooting, and I walked into it by mistake.
Which just goes to show you that 1) possibilities are everywhere if you just open your eyes to them, and 2) you can learn important things on even the worst days of your life. Which I suppose was pretty fucking true anyway.