Storms and Power

Don't get me wrong, I love snow, but not when it's heavy, wet snow that gets dumped on your 60+ year old fragile trees in your neighborhood - trees that are menacingly looming over sagging power lines, without snow on them. Wet snow always spells trouble. We tend to lose power about 3-4 times a year, most of the time it feels random and isolated - a downed power line that gets strung back up by KCP&L within a few hours. However, we have had major storms wreak havoc on our neighborhood over the past 20 years, three of which I can recall quite vividly.

In 2002, we had a major ice storm that dropped 2" of freezing snow and ice, knocking our power out for 4 days. Fortunately, this was prior to Sarah and I having kids, so we weathered the storm and survived, however it was on day 4 of not having power or a reasonable amount of heat (we have a non-functioning fireplace) that we seriously contemplated staying elsewhere. Ironically, we were pulling out of the driveway to watch the Superbowl at a friend's house, when the power was restored. We ran around the house flicking lights off an on, just for the sheer pleasure of watching the glorious magic of electricity in action.

In the summer of 2017, Kansas City was hit with a terrible summer storm, with gusting high winds that sheared limbs and ripped entire trees completely out of the ground, dropping them on houses, cars, and again on our flimsy above-grade power lines. Our neighbors across the street had their entire electrical box torn off the house and their entire deck destroyed by several falling trees - their backyard looked like a war-torn jungle afterward. That storm knocked the power out at our place for 3 solid days. After the second day, the house became very hot during the day (as it was summer and very humid). By the third night, Sarah and the boys found refuge with friends down south who were not affected by the storm. Mira and I decided to brave it in the house, which in hindsight, was not a good idea. The rationale was the prospect of trying to take care of Mira in someone else's house, without the luxury of her bed (changing, transitions, and lifting would be a nightmare), navigating her chair, and the food items we would have to lug around, just sounded like a daunting amount of work, thus we thought it made sense to try and sweat it out one more night. It was not pretty, with temperatures in the 90's in the house during the day. We did survive, just barely.

Fast forward to Friday night, where this latest snow storm left over 100,000 people in KC without power. We were one of the fortunate ones, as we only lost power for about 36 hours. Right after the Chiefs playoff game started about 3:30pm on Saturday, we went dark and it stayed out until Monday about noon, when power was finally restored to our block. Mira's teacher was not so fortunate - her lights finally came back on just yesterday. 

So how do you make it work with a non-verbal, non-communicative, non-ambulatory child with special needs? Well, fortunately we had a good friend who was at the Chiefs game who loaned us his generator, dropping it off around 9:00pm on his way back from the game. Had we not had the generator, we would have been in dire straits, as the temperature had already started to drop into the high 60's by this time. With the generator, we were able to run one space heater, a few lights, and the refrigerator. We stuck the heater near Mira's room, dressed her in 2 coats, and crossed our fingers that this particular outage would not be a repeat of 2002.

By the time Monday rolled around, the house had dropped to the low 50's and were starting to consider different options if the outage continued much longer. Fortunately, the kids could all go somewhere warm during the day - school. I think Mira was happy to get out of the house, although she was an incredible trooper throughout this whole ordeal - we still did our usual routine of racing and walking around the house, only having to dodge the smattering of electrical cords and surge protectors strung across the floor (see pic above) so Mira was really not completely out of her element. We had blankets across her legs with double socks at times to keep her warm. Her bottles took longer to warm up with hot water, as we could not run the microwave, but Mira did not seem to mind the extra wait time. 

I lost count of the number of times I had to run down to fill up the reserve gas can for the generator or how we had to play musical appliances just to make a cup of coffee, but all in all, it could have been so much worse. Monday morning I took some time off work to go on a generator hunt around town, which was pointless - no one had any in stock and no forecast of when they might have more in. We will be getting a generator of our own at some point, most likely after the next wave of snow hits this weekend. Yes, now that we are all trying to get back in a rhythm, the forecast for this weekend could potentially be a repeat of last Friday - we are expecting a combination of rain, snow, sleet, and colder temperatures starting tomorrow.

On a positive note, I had my last trip to northeast Canada, this week. As if the snow and cold in Kansas City wasn't enough, I had a scheduled flight into Halifax and a drive to Moncton from there on Wednesday, which I returned from this afternoon. Nothing beats white-knuckled driving in the snow, in the dark, with gusting winds, in January, for 2 1/2 hours through the backwoods of eastern New Brunswick. Is winter over yet?

Unhappy Wail-a-Thon: The Sequel

Mira was completely content all day today, until everything exploded about mid-afternoon. We ran a few errands right around lunch time, with Mira kicking her feet and ready to move at all times, our fingers crossed that we turned a corner after a dismal day yesterday. She had been getting very twitchy and was having a ton of strong myoclonics by the time we got back from errands, so I have no doubt her change in demeanor was neurological in nature.

Shortly afterward, she went into a repeat performance by getting extremely irritable around 3:30pm, which I temporarily remedied by walking her around the house (the weather was not as pleasant as yesterday - very windy, occasional rain, and 15 degrees colder by this time) with her playing with her toy while we walked, for a solid 90 minutes, without stopping. She must have had 2 or 3 dozen mild myoclonics while we were walking, but consistently played with her toy the entire time. The picture below is her face after we finally stopped walking.

Right after I took this, she started up again by voicing her displeasure of bath time, by wailing at the top of her lungs for 45 minutes. Her wailing echoed off of the tile in the shower walls, which literally made my ears ring afterward. Even after we were done with her bath, she continued to scream in her bed for another hour, until we gave her Valium to settle her down. She was having serious difficulty decompressing from whatever cycle she was in. We have only had to use Valium maybe 2-3 times in the last year or so and today was one of those days.

This has been one of the most exhausting 'breaks' we have had in years it feels like, and perhaps it is just my feeling of sprinting toward the finish line of this current school-less marathon, trying not to collapse or vomit before I hit the tape. The kids have been out of school for a over two weeks and it feels like it has been an entire summer. They are back tomorrow and it couldn't be soon enough - we all need to get back in a rhythm. Sarah and I could really use a vacation from our 'vacation'.

Welcome to 2019

Not there there is any magic timer that resets come January 1st, but here we are day 5 into the new year and Mira is having one of those days. After having a few decent days in a row, her irritability started to ramp up this morning about 10:00am and has been going off and on for the last 6 hours. We have been trying to pull out all the stops with her since - inside walks, long outside walks in the sunshine, bottles, her toy, and even her toy while she is walking inside the house, but nothing is keeping her happy for more than 10 minutes at a stretch. She is currently wailing in her bed at the top of her lungs. Nothing left to do for now but wait it out. Sigh.

The New Year

Mira finished off 2018 with some heavy seizure activity - one big tonic-clonic, followed by some mild dystonia for the rest of the day, which slowly started to dissipate by early evening, so much so that Sarah, Jonah, Mira and I managed to go out for some Chinese for dinner, which was nice to be able to get out of the house. The restaurant was fairly empty when we first arrived, but by the time we left, it was pretty packed. Considering it was New Years and the fact that we were getting four seasons in one day yesterday afternoon (rain, which turned to snow, yet never cold enough at the time to stick or accumulate) which caused most people coming into the restaurant to getting carryout - I think the weather kept a lot of people indoors, as the temperature had dropped 10 degrees by the time we were headed home. Mira was very quiet throughout dinner, still slowly recovering from the effects of some mild dystonia. She showed a little energy before we left out the door, perking up a bit and kicking her legs. She had a decent appetite before bed and enough energy to have a few bottles.

This morning she is having some strong myoclonics, which is a fairly typical morning for her. The dystonia has subsided for the most part, although in its place, are a lot of intense upper limb jerks that are keeping her from organizing enough to drink anything. We will wait it out for an hour to it to subside and try again. After nearly two solid weeks off of work, I am going to have to get on a regular sleep pattern somehow by tomorrow morning. Wish me luck.

I hope you all had a safe New Years Eve!