As last week started, I was getting Gage ready Monday morning, watching closely for any ‘episodes’ before I sent him off to school. Lately, he’s been having muscle jerks and facial twitches that are new and different. They aren’t severe, but they are frequent, which is concerning. These episodes prompted a 24 hour EEG that we just finished up…more on that later.
As I monitored Gage’s movements while he got dressed, ate breakfast and brushed his teeth, something occurred to me. I’ve been so freaked out by these small episodes, I hadn’t really thought about the length of time that had passed since his last big one. He’s had a pattern of having bigger seizures every couple weeks. But I realized that his last big seizures were the day he had one in the car after therapy, and two more following it. Looking at the calendar confirmed it had been three weeks since that day…not terribly long, but still a length of time worth appreciating and celebrating in our world.
At school that day I was telling Gage’s school nurse about the time since his last big event. We’ve increased his medicine since then, so I thought maybe it was effectively helping. I took Gage home with me after giving new meds to the nurse and that afternoon we cuddled together on the couch while he napped. He awoke abruptly with stiff muscles and labored breathing. I knew instantly he was in the middle of another big seizure. I carried him to the bathroom and waited for the projectile vomit that I knew was coming.
After he was cleaned up, he returned to a peaceful sleep. It would be tempting to think I jinxed things by acknowledging those seizure free weeks. But I don’t really think it works that way. I won’t pretend I wasn’t pissed that the count started back at zero that afternoon. But I also won’t dismiss the value in acknowledging the good things, even if they are fleeting. Celebrating 3 weeks free from big seizures didn’t cause him to have more seizures. On the other hand, being concerned about the smaller more subtle stuff going on shouldn’t be ignored either. But focusing only on the hard parts of our lives doesn’t make it any easier to get through them.
Gage and I spent the last day in the hospital for an overnight EEG. Yesterday morning got off to a rough start. Gage had 2 significant seizures before we ever made it to the hospital. I was fearful he’d need a dose of meds to stop them, and we wouldn’t even be able to do the EEG. But that wasn’t the case. Gage pulled through and was such a trooper while they hooked up all his leads. He was giggling the whole time and cracking up all the techs and nurses. Even being confined to a bed or his chair in the room couldn’t dull his shine. We fought off boredom with a stash of books and plenty of PBS KIDS, plus a nice long nap in the afternoon. Once the nap was over, some of Gage’s episodes started.
Evan and Caleb came to visit after work, so dad helped time stamp several episodes on the monitor. Caleb stayed busy exploring the hospital room. He informed us “this bathroom is good!” and kept Gage entertained during his visit. Having our whole family together for a bit brought a some normalcy to the sterile room.
This morning Gage’s neurologist came to the room to discuss the findings. The EEG confirmed that his short frequent episodes are in fact seizure activity. While it’s not happy news, it does make it clear there are some changes needed for Gage’s treatment. The doctor and I discussed several different options. I wish choosing what to do next was as clear as the need to make a change.
Regardless, I’m glad we have answers and can figure out a plan to move forward. I hope it will lead to a life free from seizures for my sweet boy. As we take the next steps, we’ll try to find the right balance between celebrating small victories, finding joy in each day and acknowledging the things that are hard or not quite right.