Update on the Kid, #5981

What’s new with E?

HEALTH STUFF

He still has all the same health problems. But at our last neurology checkup, E’s doc informed us that he thinks E is still having seizures, despite the information we got directly following his last EEG (see also The Kid’s EEG Results, Latest) and that in order to really figure it out, we should do another 24-48 hour EEG. To which we naturally responded, HURRAY! Ha. Ha. Ha. That’ll be in a few months, so we have some time to plan our coping strategies.

We’re considering another course of Botox/Dysport injections. More on that in the future as we come to it.

FUN STUFF

E has started clicking his tongue when you ask him to. It’s pretty cute. The whole thing was spurred on by his auntie, who has magically kid-whispering skills and I want her to live with us and talk to E every day. His speech therapists are thrilled.

E’s Birth-to-Three team got a grant to adapt one of those motorized cars for him.  I believe the main program is known as Go Baby Go. Here’s a video of the program in Poland, I believe:

And recently I saw this post at Ellen’s Love That Maxabout a team of SU students who did the same for a local kid:

Students build a toy car for kids with disabilities, and open up possibilities

I have to confess, when E’s team first approached us about this, A and I were not enthusiastic. I have always really disliked those little cars, for a lot of reasons.

  • They are such landfill fodder. Big plastic hunks of junk.
  • They’re battery-operated. Not only more batteries, it’s a bigger battery toy. Argh.
  • They make high-pitched whines while running. While this is annoying to me, it’s also been discussed as a possible problem for E, who has issues with some noises. The solution would be for him to wear earmuffs.
  • To my mind, they normalize luxury vehicles for children. They’re all Humvees and Beemers and Jaguars, and it drives me nuts. E’s car is a freaking Maserati. It makes a ridiculous VRRRROOOOOOOOOM acceleration sound upon startup, one that I generally associate with insecure drivers who peel out of parking lots (and presumably get tickets or run into trees). Naturally, if E could talk, I’m sure he would be all, I have no idea what you’re upset about, Mom. It’s a CAR. Car goes VROOM VROOM. But it still bugs me.

A and I talked, and then we talked with the therapy team, and then we talked some more. And ultimately we had to decide what we always do: if this would possibly work to help E be more independent, if it would be fun for him, if it would help him in any way, then we have to try it. And if it doesn’t work, we can always give it back. I assume we’ll have to do that anyway once he’s outgrown it. The school district will then readapt it to another child’s needs.

Our district is the best district. Did I mention that?

REGULAR KID STUFF

This section is so unfair. E (and by proxy WE) should not have to deal with any regular kid stuff, because, so unfair. Anyway. His back molars are coming in. Mealtimes and nights are the crap right now, yo. And thus I declare this “regular kid stuff” section closed.

 

Obligatory Unrelated Thought of the Day: is there a pattern in history to attempt to relate the brain and mental processes to whatever technology is popular? Is this related to connections between science (brain) and technology (technology)? I can roll my eyes at people authoritatively comparing dreaming/sleeping to system reboots/defrags/whatevs, but only so hard. My eyes hurt.

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