So here we go again. It's amazing how quickly we became complacent. Despite all we had been through, 3 seizure-free weeks made us feel like we were done with them.
I talked with Lively's neurologist on the phone the next day. We're lucky to have her. She lets me email her between visits, calls to check up on us, and is happy to talk on the phone if we have questions. We're going to increase his topamax over the next 3 weeks and see how he does, but if he continues to have spasms, we're likely going to end up in the hospital again for another 24 hour EEG.
Pete says he's noticed a couple more clusters of spasms over the last 2 days, and our babysitter evidently noticed some also. We've only been on the new dose of the topamax for the last day, so I'm going to give it a bit longer before I (1) report the ongoing spasms to his neurologist or (2) freak out.
Meanwhile, it's spring and feels almost like summer, which is both good and bad. It's great for Annie, who needs to run around and play outside, and who loves going to the park with all her heart. Here's a picture of her on her bike at the park this week.
Spring is bad because all around us, other people's kids are acting normally, playing and running around, talking and walking. And it reminds me that I don't know if my little boy will be able to do those things. I don't begrudge the other kids their running and play time, but sometimes it's hard to see how far we're going to have to go.
We took Lively to the park on the same day. Here's the evidence.
While we were at the park, we met a woman with her 14 month-old little girl. She was very nice and her daughter was cute, walking and playing normally. Her daughter was swinging next to Annie, so we struck up a conversation:
"How old is your little boy?"
"Eight and a half months now."
"Is he crawling yet?"
"No. Not yet."
"Well he will be soon. Crawling around everywhere, getting into everything."
"Hmmm. Yeah."
"Wow, his cheeks are really fat!"
"Um, yeah."
"He must be a good eater."
"Yes, he has quite an appetite."
OK, I've probably instigated conversations like this myself with strangers in the past. She was being friendly and nice, and of course there was no way she could know there was anything wrong with Lively. But it was painful.
She kept asking nice, friendly questions until it came to the point that I either had to lie about Lively's ability to meet some milestone, or I had to tell her what was going on. I think eventually she asked me if Lively sleeps through the night, and I told her no, but it's because he's taking a medicine right now that makes him very hungry, so he wakes up to eat every few hours. "What's the medicine he has to take?" "Why does he have to take that?" "Why is he having seizures?" "Why did he have a stroke?" And so on. I think she may have told me a story about some kid she knows who has seizures or who has had a stroke.This did not help me feel better.
It's hard to know what to do in these situations. Pete thinks I should just say yes, he sleeps through the night, and avoid the rest. But I don't want to paint a picture of Lively that is anything but who he is exactly. I'll let you know when I figure this one out.
Finally, I'm including a photo from a few nights ago. I was working in the basement, and it was late and Pete wanted to go to bed, so he brought Lively upstairs to give him a bottle before bed. We've been trying to fill up his tummy with milk mixed with cereal before he falls asleep so that hopefully all of us will sleep for longer stretches. So far, it's not working. Anyway, Pete put Lively in bed with him and promptly fell asleep. I thought this little scene was so cute.
My boys!
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