Unprecedented Times

 

I'm really not sure where to begin with this post, as it has been over a year since my last, so given all of our recent societal whirlwinds, I will just start with that I suppose. With the explosion of Covid-19 over the past 7-10 days, nearly everything in our day to day rituals has been slowly changing; slowly evolving; slowly morphing into something new and unprecedented in our lifetime. At the end of the day when we sit down to reflect on another day of reading, waiting, unfolding, and confinement, I find myself asking the question 'is this really happening?'. Yes it is. Sit back and hang on, as it may be a long, bumpy ride with a lot of unexpected turns.

I am sure this is a recurring theme throughout most states, but here in Kansas, schools have been closed for the rest of the academic year and today, an early afternoon press announcement notified everyone that greater Kansas City area that it will initiate a shelter-in-place protocol, starting this Tuesday at midnight. Similar to other major metropolitan area enactments around the U.S., only essential businesses are to remain open. Outside of the most obvious ones, being hospitals, health care, and the like, others include grocery stores, gas stations, and hardware stores. Life in Kansas City for the foreseeable future is changing, as these restrictions are to remain in place until at least April 23rd.

With the closing of schools, the district will shift gears toward an online approach and the boys will adapt to a schedule of working and learning from home. What that exactly looks like is to be determined, but seeing as their curriculum is very traditional in nature, it should be easier to shift to a virtual platform much easier than they will with non-traditional students. There will be adjustments and there will be challenges for the boys. For Mira however, we are anticipating that the picture will be very different. We are uncertain exactly how the district will continue to provide PT, OT, vision, and a host of other therapies, remotely. Obviously, these types of therapies require face to face interaction with a para and/or therapist, which in our newly enacted stance of social distancing, is nearly impossible. While home therapy is a possible avenue to explore for therapists, risking contact with multiple children, many of which are at risk for developing respiratory infections, every day is definitely not a great approach for the kids, the therapists, or any of our/their families. We are communicating with Mira's teacher to try and understand how we are moving forward, however, this was Mira's last year of middle school and it has ended very abruptly. She has to transition to high school in the fall and before that, typically has ESY (Extended School Year) for the summer, which as of right now, is questionable as to whether it will even happen. So much for minimizing transitions and change for Mira. For the most part, Mira has been handling the down time very well - this was however, spring break week and everyone was supposed to  go back to school tomorrow. We are officially entering uncharted waters, as the kids will not be going back to a physical school until August - 5 months from now.

As for how Mira has been doing over the past year, well, there have been some definite ups and downs. Throughout most of 2019, we were seeing a steady increase in dystonia days, periods where Mira is rigid, clammy, and distant, having these recurring episodes of dystonia or dystonic movements, lasting anywhere from 8-24 hours - these are the same episodes she has been having for years. We started experiencing more days like this, as many as 4-6 a month. It was to a point to where there needed to be an intervention, thus her neurologist started her on a low dose of clorezapate. This dosage seemed to help initially over the summer, where the dystonia days were reduced somewhat, but over the past few months, we again have started to see an increase again. Clorezepate of course is a benzodiazepine, which the body often builds a tolerance to, thus they tend to lose their efficacy after a while. Benzos are a vicious roller coaster which we are always reluctant to ride, so for now, she is holding steady on clorezepate, fluoxetine, and pregabalin, which she has been on for years.

On a positive note, we were able to get our bathroom conversion finally completed and it is a fantastic improvement for getting Mira in and out of the shower. It has a zero entry floor, giving a seamless transition in her shower chair, but most importantly, the shower itself is way wider, which allows for much more maneuvering insider the bathroom.

On a second positive note, we were also able to purchase a converted van, for a small fortune. We finally gave up on dealing with Medicaid to help with any sort of financial assistance, as they offered zero transparency in understanding what they would pay for and what we were responsible for, making it a ridiculous financial equation that you could never solve. We ultimately found a 2011 Odyssey in Texas, with only 15,000 miles on it and had it shipped here. The van itself worked flawlessly the first few months, then the lift mechanism became increasingly temperamental, not wanting to work properly with the 'kneel' feature in the van, or just not work at all. We are still dealing with its idiosyncrasies, but don't drive the van enough to warrant leaving it at the shop for days on end to try and figure out what is wrong with it - we have already had them look at it several times.

I suppose in looking back on 2019 overall, it truly felt like a marathon - we were seemingly always busy, always in motion, always trying to get all of the puzzle pieces to fit to try and keep our family running smoothly. The beginning of 2020 proved that the marathon wasn't complete, as we kept running, kept in motion, and everything was falling in order for once. That marathon stride was broken a week ago with the unfolding of this pandemic. We will keep moving, just at a different pace, down a different path.

Stay safe, stay healthy, and most importantly for now, stay home.