So we tried to drive through the night with Bennett on Tuesday the 19th to get to California for Christmas. Yeah...that was a TERRIBLE idea. When he woke up for his first bottle around 12 (had been driving about 3 hours) he would NOT go back down. It didn’t matter what we tried. And we tried for about 2 hours before we finally called it quits and stayed the night in St. George. Even once we were in the hotel he was still so worked up it took about an hour to get him to sleep and he kept waking up over and over again for no discernE reason.
We got up and started driving after breakfast the next day and we made it the rest of the 6 hours (turned to 7) by making sure we stopped around mealtimes and let him get out and about and really pushing forward when he was napping. I think we’ve decided it’s much easier to travel with him during the day than at night, and we’ll never do that again. It was awful.
Now that we’ve been here a few days though, he has finally started to calm down his sleep a bit. He still wakes up more than 2x every night and he can’t settle without a swaddle, but we think we’re seeing him level on the Pheno drop finally. Unfortunately, we need to drop again so he’ll basicLly be at 15 mg/ day. We want to drop it here in CA where we can sneak naps in if his sleep goes to hell again because my family is around to help with him. But we are seriously dreading it.
Overall during the days he’s been doing awesome. Super engaged, learning things, waving this week! Loved being with all of his aunts uncles and grandparents. Still sitting on his own and crawling like a fiend. Trying to walk. Etc. but we have to get off the Pheno so we’re gonna have to risk. Drop in daily mood.
Today was Christmas Eve. It was an emotional church for me because for some reason “Once in royal David’s City” was performed and really brought up all of the emotions SCN8A holds for me. I was just looking over watching my siblings And parents play with Bennett and couldn’t help but think of how heartbreaking it would be if we were ever to have a Christmas with our family where he wasn’t there. Or if we ever had to miss Christmas because he was in the hospital recovering from a seizure or something.
I think that talking about Mary and her giving birth to Christ, her baby boy, just triggered all of my strong feelings of love for Bennett and with those seem to come all the feelings of fear lately. I was also just overwhelmed with gratitude for how well he’s doing right now and how happy he is during the days. I’ve been so grateful my family is getting to spend as much time with him as they are this week. I want them to get to know him and love him like we do and up to this point he hasn’t really spent much time with most of them.
Anyway, I’m not sure why today was one of those days for me, but I know that watching Bennett play baby Jesus in our family nativity (and be totally chill and adorable the whole time, haha) was the highlight of this Christmas season for me. It was so tender for me to see him be held by my cousin and just seem to enjoy every minute of it. I don’t want to ever have to think about how we would cope if he were ever gone. So tonight I’m just thinking about how grateful and happy I am that he’s here, and he’s doing so well. Can’t wait for Christmas morning tomorrow! He loves the ribbons on the presents, so I think he’ll have a ball!
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