We've gone exactly 4 months and 11 days since Bennett's last seizure and I'm so grateful, but also feeling like another one is inevitable at this point. Once we hit the 3 month mark (last time's record), I started to feel anxious again about when the next one would come. But so far being on the Trileptal alone seems to be giving us solid seizure control!
As far as his development, Bennett's walking hasn't changed much in the sense that he still struggles to make it past just a few independent steps at a time. But we got a walker from our physical therapist last week, and then my parents made him a smaller PVC walker and ever since we got that, Bennett has just taken off. He still can't walk on his own, but he LOVES running around with the walker. The first two days he was literally running laps up and down the street, haha. It was pretty emotional to see him feel that sense of independence for the first time. I just wish he could walk and run on his own--not just for him, but because then I might stop wondering "Will he ever walk?". Since a lot of the SCN8A kids don't walk, it feels like a very real and scary possibility that Bennett might not either. That wouldn't be the end of the world, but it's just hard to not know.
His speech has stalled as well, if not regressed again. He doesn't mimic sounds or words, but he can sign pretty regularly and effectively. He's actually started signing chains of words like "want" "food", then point to what he wants. It's amazing to be able to communicate with him, but it also means he's acting much more like a typical toddler when he doesn't get to do what he wants. It's like before he didn't get frustrated because he knew we didn't know what he even wanted. But now he knows we're actually saying "no", haha. So that's fun...
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