Our New Normal

Cyrus has continued to do incredibly well, somehow remaining seizure free for three weeks now! And as a result we have been able to benefit from his personality coming to the surface. As you know the first few days were incredibly happy - I think that coming out of his seizure fog, he was just in awe of the whole world!

Since then, we've also gotten to see the other side of the emotional spectrum. He's more opinionated in general. He seems to hate his medicine again, which makes administering it three times a day super fun. And he will sometimes object the moment we stop playing with him or put him down, even though our arms are throbbing with overstretched muscles. He constantly wants to engage and he's so cute he's just impossible to resist.

Last week we took Cyrus to a sensory and social class. The first hour is spent in circle time, designed to promote sensory play. This involves playing with toys, singing songs, and socializing with other children in the class. And despite getting up at eight in the morning (which is four hours earlier than normal) he did well. The best moment was when he turned to a girl sitting next to him and they locked eyes, maintaining eye contact for a solid 15-20 seconds. I have never seen him do that before. The second hour is devoted to motor play. Here, the children get to play on swings, ball pits, just rolling around on mats. His favorite was definitely the trampoline, which was enough to send him into constant giggle fits.

The rest of the day however, was ruined after getting up so early and exhausting himself in the class itself. He became king cranky pants and would not stop crying. Even once I got him down for a nap, he woke up ninety minutes later almost as angry before he went to sleep.

And you know what?! It was an exhausting day, but even then I couldn't wish for anything different. Knowing what it's like when your child doesn't cry - I'm telling you this is better! So if he needs to be held and soothed and rocked, we will do that. I'm getting really strong! The constant squats don't even phase me now! And when he is calm again when being held (though I cannot put him down without his face crumpling into tears) we're simply going to cuddle up and settle in with Netflix!

This week has been better. After confiding our going to bed at a reasonable time troubles to our pediatrician, she gave up some melatonin. We give it to him 30 minutes before bedtime, and it's magic!! He falls asleep naturally despite the choreiform movements. Cyrus has gone to bed by eleven for a whole week in a row! (Though mommy has yet to adjust to not staying up all night...) With the better and more consistent rest, the chorea has lowered in intensity and his mood has been more consistently on the happier side and life for all of us feels more sustainable.

Grandma is visiting this week and was willing to babysit, allowing Kyle and I go on a date for like the second time in six months! Yay!