Have You Seen These Feet?

My friend Shawna and I both have children with severe epilepsy syndromes.

Strangely enough, her son Cody and my Michaela also have another thing in common:

Weird Toes.

Case in Point:

As you can see, the second toe sits higher on the foot than the other toes. This setup makes it look like the kids only have 4 toes if you look at the bottom of their feet. Michaela's feet have grown so that it's not as obvious, but it used to be very prominent when she was younger.

If you, or anyone you know, have toes that look like this, please PLEASE let me know. We're trying to see if there's a connection between the toes and the brain issues. We're very likely barking up the wrong tree, but it never hurts to search it out!

Calculus and Catastrophic Epilepsy

So Chris is in college again. But many of you know that. What you may not know is that he's taking Calculus. He took this class 14 years ago, when he was in college the first time.

And he didn't do so hot. I think he got a "D."

Some would say (ie: Chris) that the reason he did so poorly was a combination of 3 reasons: he was goofing off in school, he had a bad professor, and he was dating me. Why I would have anything to do with his poor grade, I have no clue, but that's what some would say.

Either way, he's re-doing the class, and doing rather well this time (funny how I'm still in the equation, no pun intended). It was rough for him at first, seeing as how calculus is somewhat of a higher math, and he just hasn't had to think that hard for many years. So of course, I'm trying to do what I can to help him through it. At first, I suggested that he teach what he learns to me, so that it would help him solidify the concepts. He didn't think that would go so well. Fine. Next I suggested that he show me what to quiz him on. Again, that didn't suit him.

But, in an unconscious way, he's picked his method: he comes home and at random times (usually when I ask him how class went), he goes off into this grand dissertation on integrals, limits, functions, derivatives and what-not. To which my mind starts swimming and I am officially speechless AND clueless.

As the saying goes, "It's all Greek to me!" so I just nod my head and let him ramble.

But one thing I've picked up on, is that there is a fair amount of trigonometry intermingled in calculus. I know this because he's often hemming and hawing about how he remembers nothing about trig and really could use a refresher course.

Trig, on the other hand, is something I remember a bit about.

And truth be known, I've lived in a literal sine-wave for years now.

***

Yesterday was our bi-annual trip to see Chief.

Bi-annual is just a loose term. It usually ends up being somewhere around quad-annual, but we shoot for bi-annual. February and August. That's the goal. We almost made it last year. Maybe we'll be able to do it this year, we'll see.

But at this appointment, we didn't have a whole lot to talk about, and that's a good sign. For a long time now, Michaela's been stable.

I can't remember the last time she was tube-fed.

The wheelchair is in storage--pulled apart into different pieces.

I even put away almost all her bibs and her drooling medicine (a couple showed up after doing some cleaning). I'm glad not ALL of it was put up, because there have been a few days here and there where she seems to "slump" and needs a bib and some meds. It doesn't last all that long--just a couple of days. Then she's back to her normal self.

But for the past couple of months, she's had quite a few ups and downs. Seems like every other week she's having her obligatory "bad days." Bad days where she doesn't talk a whole lot, drools quite a bit, and gets kinda stuck. She slowly starts to lean in her seat, like she's going to fall over. She picks up something, and her arm stops....hanging in mid-air.

One minute she'll pick up her spoon, put a bite in her mouth, and start to chew. The next minute, this happens:



And some might think that this is one of those "staring seizures," but it's not. In a true absence seizure, you can't "wake" them up. They come out of it on their own. But when she's like this, you can kinda un-freeze her by saying her name or moving her. She even functions better when standing up. Maybe some day I'll get a video of it. It's pretty interesting.

But this is about 35% of her life right now.

The other 65% is like this:



Nothing to sneeze at, I know. We'll take the smiles. Even if it's only two-thirds of the time.

But yesterday, Chief and I were discussing some of the finer points of trigonometry: specifically how sine relates to Michaela's version of LGS.

See, the wave used to appear like this:

Higher highs and lower lows. The intervals being fairly close together.

Now, we're seeing something more like this: Kinda like a kiddie coaster at a cheap carnival. Not very scary. The intervals may be just as close together, but the intensity is definitely less. Would I like the intervals to be farther apart? Sure. And there's been times when it has been. We're going to up her meds to see if that helps, but I guess, in the grand scheme of things, this is a pretty decent wave we've got going here.

And THAT, my friends, could be a "sine" of even better things to come ;)




(because even I know how to do that kind of math......................but don't tell Chris)