Last week I wrote about how tired Ronan was when we woke up Thursday morning. Waking up tired is not unusual for Ronan. Mornings are typically tough for him. When he wakes up more tired than usual though, and also with his Thomas the Tank Engine sleeping bag next to him, I worry. I also set a mental clock: 48 hours. Go.
That sleeping bag was given to him by dear neighbors of ours when Ronan was a toddler. He snuggled with it so much back then that we used it as a comforter for his bed. Ronan has a new comforter now, but he will still sometimes reach for his sleeping bag. I always keep it in his bedroom in case he needs it, because when Ronan grabs for his Thomas sleeping bag, it usually means a seizure is on its way. When I got Ronan up on Thursday last week, the sleeping bag was wrapped around Ronan. He wouldn’t let go of it when I got him out of bed to change him.
The countdown had begun.
Thursday was tough. But we got through it.
Ronan was a little scattered on Friday morning and had a few negative behaviors, but he was able to be redirected.
Friday afternoon was easier, but I still tip toed through the day giving Ronan extra time to do things in case he needed it.
Ronan became fixated on playing Wii (and nothing but the Wii), but he was looking good. As the day went on, Ronan hadn’t shown any signs of distress, so we kept our plans to go out with friends on Friday night and grabbed a bite to eat. I’m glad we kept our plans. Ronan enjoyed himself and our friends remarked that Ronan looked good.
Since we got home late, we slept in Saturday morning. I love alarm-clock free days. Ronan does too. He slept for over 12 hours and woke refreshed (and hungry!) Saturday morning. The best part of this particular sleep-in-late day was that Ronan slept through the final hours of that 48-hour seizure watch.
Once breakfast was over, we made plans to visit other friends and to explore a new area.
Saturday was fantastic. The weather was perfect. The kids were great. The drive we took was beautiful. We got to walk around and do some touristy stuff. Ronan enjoyed being outside exploring too. From start to finish, it was such a good day. I couldn’t have asked for a more perfect family day out.
When we got home, it was time for the big kids to start their bedtime routine—taking showers, putting pajamas on, brushing teeth and getting Church clothes laid out for the morning. I knew it would take a few minutes for them to be ready, so Ronan and I went to his bedroom to wait for everyone to join us for nighttime prayers.
I love this quiet time with Ronan, because he’ll sometimes open up and say things. As I changed Ronan into his jammies, I talked about the things we saw and did that day. I asked Ronan to repeat some words I was saying because it sounded like some of the vocalizations he was offering were actually verbalizations. That night, he came *this* close to saying Mom!
I quickly turned on the video recorder hoping to capture Ronan speaking again. But instead of words, I recorded a seizure.
Sometimes Ronan’s seizures are very quick. Just as quickly as one starts, it’s over. But Saturday night, Ronan had another one, and then another one after that. His seizures continued for the next hour. I held him. His sister held him. His Daddy stayed close by. We kept track of how long the seizures lasted until they were done. When they were done, I tucked Ronan in and said good night.
As we tucked Ronan in, the fun, excitement and enjoyment of my day was completely gone. How could I find anything remotely happy when my son’s seizures took over his body? His eyes fluttering and rolling back. His arms flailing and his torso contorting this way and that. I have nothing nice to say about seizures. Seizures suck. They really, really do.
How I wish these seizures would stop. How I wish I understood them better and knew how to stave them off. We’ve got a 48-hour EEG coming up where Ronan will be hooked up to electrodes that will measure the electrical activity in his brain. As much as I hate to schedule this invasive procedure, we need to figure out why these seizures are still happening. Why they’ve increased. And why medication is not controlling them. If we can get a grip on the seizures, I imagine some things could be a little bit easier for Ronan. How I’d love for things to be a whole lot easier for him.