setting records

In July, this kid set a new personal record by going three months without having any seizures! No doubt Calvin is benefiting from one of his two new-ish drugs, Xcopri, (the other being Briviact.) It does seem that having fewer seizures has helped him feel better overall; he is having fewer manic outbursts, wakes up content and goes to bed smiling when we hug and kiss him.

Amid fewer seizures, and therefore less anxiety and worry for us, we've been taking him to a few more places. On average, he has been more compliant about walking. We are seeing him smile more often—not just at bedtime—which warms my heart. Here he is walking at one of our favorite haunts, Simpson's Point, which we have visited by car probably thousands of times, particularly during the pandemic when Calvin did not go to school for fifteen months and was unable to access remote learning (because he is incapable.)

Now Calvin's brief and abbreviated summer school is already over, and so he is left with zero services for the entire month of August. That means we will be taking more car rides and walks and trips to the grocer. He's pretty game for it all, at least more than ever.

Thanks for all your love and support. Sorry I'm not writing as much these days. For now, suffice to say we're all doing well!


  1. Amazing and miraculous! Aiming lots of love your way... Lisa H

  2. That is absolutely wonderful news for you and Calvin. May you all have a wonderful month of August with happy memories to be made.

  3. He looks fabulous. So glad the seizures are abating. Lots of love and happy holidays to you all

  4. That's lovely to hear that he's doing better.