Ramble On: July 9th, 2019

Seizures, KMT2C, & a PDP

Ramble On July 9, 2019

We’re over a month into summer break now, with just over a month left until it’s back-to-school time for K. We’re a couple of weeks away until The Teen turns 18 years old, and we’re a couple of days away from being bitch-slapped with Tropical Storm Barry (I’ve got my eye on you, Barry, you little douche; you behave yourself).

To say my nerves are on edge would be an understatement, and finding the head-space—and time—to write has been challenging. Why? I mean, aside from the obvious stress, and the time and attention restrictions a stay-at-home mother-blogger has to work around, there’s the fact that there’s writing, and then there’s Writing.

I LIVE for Writing. I LOVE Writing. But I absolutely abhor writing. There is a distinct difference (or at least there is for me; I understand some Muse-Used experiences may vary).

Unfortunately, not every go at it has that oomph to it that accompanies Writing, that vibe where when pen hits the page it feels like every stroke you’re laying down is pure, white-hot, divinely-inspired magick that carries you a little deeper into an ecstatic trance that you lose yourself in for hours on end—and don’t think that doesn’t piss me off; it really does, but I suppose that’s probably the addict in me, the little ego-driven, thrill-seeking gluttonous attention whore who’s always on the hunt for that next hit that’ll take her just a little bit higher.

I’m always chasing the Writing rush. When the words don’t flow as easily it’s a letdown. I have to develop a habit, and then maybe, just maybe, I can manage to slip back into that sweet stream that flows from the beyond the gray and get a little bit of the good stuff flowing back through my veins. Maybe I’ll learn to find that sweet spot a little quicker, a little easier over time?

So, here I am, on a sunny and sweltering Tuesday afternoon in Southeast Texas … writing.

K’s spin-dancing underneath the shade of our tin-roofed carport, practically swimming her way through the humidity, getting her groove on to a little “Let’s Hear it for the Boy” (courtesy of Pandora) as I’m sprawled out in a warm puddle of sweat and hose spray on our weather-beaten-and-eaten back deck.

I’m here.

I’m writing.

Now, let me bring you up-to-speed.

What’s been up with at The House of Bubbles and Chaos these last couple of months?

Seizures Return

K caught yet another round of strep throat before the summer break, and it seemed to have kicked her seizure activity back into gear in a big way, with her father and I both witnessing a very obvious focal seizure lasting nearly 2 minutes (seizures lasting 5 minutes or longer should receive immediate medical attention). Her seizures have, until that point, presented as hard-to-catch-in-action micro-flashes lasting only a few seconds, and seeing her experiencing a progression like that… it sucked. It scared me, it still scares me, and it still sucks.

The ONLY game plan we have in the bag is to try to stop progression. That’s pretty much it. The neuro tends to steer us away from asking about the what-ifs in the event her seizures can’t be held at bay.

“We’re doing medication to stop progression.”

Now, I know there are tons of people out there who have seizure disorders and they live their lives, it’s something they manage and they go about things… but K’s neuro has never referred to said people when speaking with us regarding her seizures or her lesion, and that’s notable to me. Silence speaks volumes sometimes, and the things that aren’t being said, those are the things that scream at me from beyond the gray when I’m alone sometimes.

And so, one phone call to K’s neuro & her anti-convulsant meds dosage was upped (after I answered a few questions for the med team regarding recent events; they were the ones who made particular note of the recent strep throat infection, by the way, that’s not me as a parent pulling medical theories out of my ass).

With the new dosage, so far, so good. We haven’t seen any more seizure activity since the increase (thank you, Universe), and that’s outstanding; the higher dosage has put her onto a new sleeping schedule, though, with her conking out around 7:30 or 8 pm and she was getting up at an ungodly 3:30 am.

Yeah, we talked to her neuro and made some advised timing adjustments to nip that one in the bud, you betcha. Now she’s finally catching some good zzzzs (and so are mommy and daddy—yay!)*sidebar* Did you know the neurologist-recommended amount of sleep for an 8-year-old is 10-12 hours nightly? Yeah, K was so not getting that before, even with mama’s little melatonin helper.

Another KMT2C Family

Another family with a kid who has a KMT2C genetic variant found us on social media!

I’ll cover this in more detail in a future post, but (at least to our family) this is kind of a big deal. K was the 3rd identified person with this change, and I’ve been hunting for other families for years with no success. I’d pretty much given up on it. I’m thankful for the connection, which wouldn’t have been possible if I’d not started BubblesAndChaos.com, and I’m taking it as a big ol’ neon “Go” from The Powers That Be to get my rear back in gear here.

Mama’s Working on Leveling Up

I’ve been investing in my personal/professional development.

I’ve signed up for a few online classes to further my graphic design education, and also for a couple of classes to extend my blogging know-how. Little by little, I’m clarifying the wheres, whats, and whys behind my personal and professional development. I’m excited (and admittedly a little freaked out) about what’s to come, but All the Fun Lies on the Other Side of Fear. #BeBold #LevelUp Click To Tweet, huh? Or at least that’s what I’m telling myself, anyway, to power through it.

The tropical storm is set to hit soon, and I’m anticipating losing internet connection during Barry’s visit. I’ll try to hop on here as I can to update, but in the meantime, I hope you’re well and you stay safe. We’ll try to do the same.



Ideas in the Queue

1. The KMT2C Connection

2. Part 2 of “Why This Mother-Blogger Shares So Much,” which will elaborate more on how we learned of K’s focal seizures and cortical brain lesion, and why it’s important that parents share their families’ stories.

3. F*ck Your Vaccination Over-Generalization Statement! (I’m still on the fence about whether I really want to bring this one up. It’s a polarizing topic that garners a great deal of rage-posts).

4. Possible “Fiction Fridays,” where I’ll share some of my recreational writing.

Have Seizure Knowledge?

If you have seizure-related wisdom, be it from a professional standpoint, or from personal experience, we’d love it if you’d share it with us! Comment below, or send us a private email if you’d prefer. 🙂


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