Tuesday, January 19, 2016

Different Seizure...?

Today, while Nathan was at Hapkido, he had something different happen while he seized.

He was working with one of the Level Two Girls* and he said something to her like "I need to go sit down" or "go get Mrs. Ventura" and she did (I'm a little fuzzy on that part--but that's not the important part....)

The important part is that he got off the mat, and Mrs. V had him sit down and he said that everything looked like it was on pogo sticks and that the lights were flashing like in the bedroom.

Mrs. V asked him if she was flashing like the light in the bedroom and he said yes.

She also asked him if she was jumping on a pogo stick and he said yes.

This is the jist of the conversation.

The important part is that Nathan observed, and verbalized, what he was experiencing during a seizure.

We've been trying to get him to communicate this to us for five years.

If he's having a lot of seizures during Hapkido, she'll have him sit down for a break and drink some water, and that's what happened today. But Mrs. V said that this had a different feel to it, and I trust her on that.

She called me after it happened; I was in with my mental health therapist and my ringer was off (I see her pretty much every week). I was able to get to Nathan about 25 minutes later (and yes, I'm dying a little inside going to the very dark "what if..." place...but I know it's not healthy, so I'm trying to not....).

This isn't the first time Nathan has seized during Hapkido; I mean, he seizes everyday, several times a day, and we're all just used to it and we keep moving forward with our day.

Pretty much every time I drop Nathan off, I give Mrs. V a quick update "he's had his meds, he has/hasn't eaten much, he's having a good/challenging day...." While he is in her classroom, she is his primary care giver during this hour. And, she knows him really well; I trust her when she tells me this time was different.

She said that Nathan and the Level Two Girl were working on a few basic techniques; there were no elevation changes for his brain to process. Nobody was throwing anybody around. There were no back break falls. But...it was different.

After knowing Meghan Ventura for five years, I know the girl ain't gonna call me about my kid's seizures unless that shit is serious.

We tried to lay low this afternoon, but I had scheduled a play date for Isaac, with a friend of his from school (his mom came and we all hung out for about an hour). We learned that while it's fun to have friends over, having a play date after school isn't the best idea for our family.

This afternoon, both Randy and I have asked him questions about what happened at Hapkido:

"Was this seizure different?"

"When you seize, does it look like I'm on a pogo stick?"

"When you seize, does it look like the lights are going on and off?"

"Were you scared?"

"When you seize, can you hear me?"

"When you seize, can you see me?"

He answered yes to all of these.

So, I'm scared...and I'm stressed...and I'm worried.

Logically, I know the kid's been sick for over a week, and it could be related to that. I also know that a one time event doesn't indicate a pattern (thankful that I'm married to a mathematician; they look for patterns).

I also know that whenever Nathan's been sick, there is something that happens to his brain and it's like something clicks...he comprehends something better...he's able to communicate more effectively...it varies. But there's a change in his brain. I've observed it. Randy's observed it. His preschool teacher observed it. It's challenging to explain...but it's real.

Maybe this sickness that he's dealing with right now is ending and that he is going to be able to tell us a little more about what's going on in his brain.

*Level Two Girls: a great group of many sisters and cousins who also take homeschool Hapkido. N refers to them as the Level Two Girls because when he started homeschool Hapkido, he was in the 10 am class (what he called Level One) and the girls were in the 11 am class (what he called Level Two). And everyone in the homeschool Hapkido class knows what he's talking about; we just roll with it.

No comments:

Post a Comment