One Birthday and Two Days of Turbulence

It has been a busy few days around the house. My sister and her family had been planning a trip to St. Louis from Colorado for some time, making a stop in KC to visit us for a few hours, which was great. We were able to have an uninterrupted chat for a couple of hours, where Mira was content the entire time. She was even able to sit with us in the kitchen for a solid hour, not really making so much as a peep - she just sat in her cozy position, while patting and kneading her knees periodically, as if she was practicing making a loaf of bread. 

The following morning, we celebrated Jonah's 10th birthday - he is officially in double digits now! He didn't seem super impressed with the gigantic inflatable numbers we got for him, but he had a solid day nonetheless. We had Indian takeout from our favorite spot here in town (Jonah loves the naan and mango drinks), while Sarah and Jonah tackled his presents together (Legos - thanks Auntie Aura!) We later went out and picked up something Jonah has been talking about for months - a pet fish. Jonah had a good time picking out the tank, rocks, vegetation, and of course, the actual fish, which was a small green and blue betta that he named Neptune. The kid loves his planets.

That evening, Mira did a 180 degree turn from the night before and was super irritable, to the point where she was wailing at the top of her lungs, tears streaming down her face, for a solid half-hour before we decided to give her something. She had not had an episode like that for a long time. Unfortunately, she followed up with a repeat performance this afternoon. I ended up taking her for a really long walk outside right after lunch, instead of trying to easy her anxiety with medications again, which seemed to take the edge off for about an hour or so. She soon tired of the walk and was again fussy, so we ended up alternating quick fixes of bottles and doing more walking in the house for the next few hours. She finally calmed down right after dinner, after the merry-go-round of laps, bottles, and toy time eventually wore her out.

Welcome Back

Sometimes, we all have to take a break. A break from from routine. A break from kids. A break from being being a caregiver. A break from researching. A break from reading. A break from reality. A break from being in a constant state of motion. After my last post in September, which ironically was around the beginning of school, I finally decided to return to Mira's blog, right after the school year has come to a close.

Sarah and I finally took a long overdue break in October, just for ourselves. We had been planning a vacation for several months and settled on something very predictable - Mexico. I had never considered myself a beach person by any stretch of the imagination, but the idea of sitting somewhere tropical, with no decisions to consider other than where to eat dinner each evening, and no agenda whatsoever, sounded like bliss. Keep in mind that Sarah and I have not had a vacation by ourselves, for more than a day or two, for 17 years. We were long, long overdue and thoroughly enjoyed doing nothing but being spoiled by having someone bring us drinks and clean our sunglasses. We cashed in miles and flew Sarah's sister in for the week, then Sarah and I escaped, spending 5 days at the Excellence Riviera in Cancun. 

I also took a break from reading and researching. The entire zinc episode last August and September sent me over the edge and I have, for the most part, stopped reading about epilepsy and autism. I had become so entrenched in articles, literature, and research that I felt like I deranged cat chasing my tail. Distancing myself from all the reading for awhile was frankly, very refreshing. I still venture into the occasional PubMed abstract if something seems relevant, but nothing to the degree I have been doing over the past 7 or 8 years. It was exhausting and at times, seemed utterly hopeless to think I could find something tangible that would stop Mira's seizures. Nothing has ever stopped them completely and I am not optimistic that anything ever will.

With all of this separation and temporary relief last fall, life quietly resumed where we left off before Mexico. It sounds so cliche, but the more things change, the more they stay the same. Mira's seizures have not changed one iota and we have not made any medication changes. She has bi-monthly bouts with dystonia, her latest happening this past weekend, where she had 4 seizures in the morning, forcing us to administer Diastat. Most of her days are how they have been for the last 12 years - random myoclonics, random tonic-clonics, and random irritability. Overall however, her demeanor seems to be much better, still having the occasional bad fussy day, but at least it isn't every single day, as it was a few years ago. In terms of the dystonia, it often looks like this, where I took a few pictures back in November of last year - her episode this past weekend looked identical:

Clenched fists, turned feet, body gestured to her left. Cold, clammy hands and feet, with an unresponsive stare, lasting for 18-24 hours. She doesn't eat or drink, but will make up for skipped meals the following day. We don't know why. It just is. If anyone has any suggestions, I am always open to listening.

The only real change over the past 8-9 months has been Mira's vision. As you may have read from one of my earlier posts, Mira has extreme myopia, to the tune of +10.00 in both eyes. Unfortunately, we took her in for her annual exam earlier this year and her vision has become significantly worse, peaking to +12.00 in one eye and +11.25 in the other. Another symptom with no answer. Again, I'm all ears.

It will be a busy summer. We have a new kitten, our bathroom is going to be renovated in a few weeks (to make it wheelchair accessible and to have a zero-entry shower) and Mira is getting a new bed. Photos and news will be forthcoming. Breaks are good, but I promise to not take such a long hiatus between the next post.