So, we've been on Sabril for a week now and off of Prednisone for three of those days. Because we're off Prednisone, we're also off Zantac and will soon be off calcium. If Sabril works, we will also come off clonazepam. Please oh please.
We have not seen any seizures since starting the Sabril on Tuesday, but we like to say that in a whisper so that Collin doesn't hear us and we try not to think it too loudly either.
The biggest change we've seen is that Collin is happy. He's still a little on the agitated side, but he spends an inordinate amount of time smiling and squealing. He responds to sounds, shakes, changes in light, and touch. He is exploring textures with his fingers and just seems generally more aware of what's going on around him. He's been up more in the night, but nothing horribly disrupting. We will be starting our monthly ophthalmologist appointments in a few weeks to keep a close watch on Collin's retinas to make sure the drug isn't doing damage to his eyes. Since his visual response is so delayed, the only way we'll be able to tell is to actually look inside his squinty little eyeballs. As soon as we see any damage, we'll be stopping the medicine.
Also this week, as Collin's facial tissues slowly started to shrink back toward normal, all of the snot that has apparently been lodged in his head (not sure why - maybe another side effect? - he hasn't acted sick and hasn't had a fever) broke free and coursed down his face. This resulted in dozens of moments like the one captured here, several of which occurred without the availability of anything even resembling a tissue and none of which bothered Collin in the least.