Tumultuous Month

As we burst out of the school starting gate about a month ago, it has been a pretty rocky run, especially the past few weeks. First and foremost, Mira started at a new school this year. We knew the transition was going to be difficult, no matter how much you try to prepare. I won't go into to many of the details in dealing with the school district's unpreparedness in Mira's transition, but let's just say that there have already been several meetings with most of the staff already, in an attempt to make sure everyone is on the same page. There has been a fair amount of turnover in the district over the past 6 months, particularly in the special needs division, and it is obvious that the district as a whole is understaffed and overtaxed. It is improving, albeit very slowly. Mira only has 2 years at this school and we will be dealing with another transition in 2020 - hopefully it will go smoother.

Mira gave the school their first real challenge by having a multiple seizure day, complete with dystonia, the very first week. That episode, where Sarah had to come up to school and pick her up, I think was a definite eye-opener for the district, in just how much they all really need to get to know Mira. We met with the district numerous times prior to the school year starting, walked through her seizure action plan and the protocol we have in place. However, nothing can prepare you until you have actually been through it. Sarah eventually got Mira home that day and ended up administering Diastat at home, in an effort to break the cycle of seizures. Unfortunately, Mira had another one of those episodes on Saturday, where we again had to use the Diastat to break the clusters and seizure cycling. We have found that her clustering has become more prevalent this year, along with the associative intervention on our part. Chalk it up to hormones, growth, or whatever you wish - we cannot predict it. We just know it is happening more often.

All of this seizure activity has been wiping Mira out. She spent most of the day yesterday sleeping. We went out to the mall for a bit, which she seemed to enjoy for the first 20 minutes or so, but the exhaustion of all of the seizure activity the day before, just wore her down. Her sleepiness continued after school today, where she just slept, folded into her pretzel comfort position.

We have a few more appointments coming up - one with her ophthalmologist, another to get fitted for another pair of dafos, and another to rewrite her IEP with the school district. She has outgrown her current dafos over the past 12-18 months and they are too constrictive when she is in her walker at school. In terms of ophthalmology, I really don't know what to expect with her vision. Her extreme myopia has gotten significantly worse over the past year, going from a -10.00 to a -12.00 in a span of less than a year. My hope at this point is that it is not getting any worse. We are currently in a holding pattern to get her some new glasses (her last pair have been thrown on the floor one too many times and are beyond repair) so she is currently using her older ones, which have a slightly weaker prescription.

Sarah and I are finally going to go out for our 18th anniversary this weekend, over 3 months after the actual date. It has been very difficult for us to get out, with extremely limited resources in the babysitting department. We have been actively working every avenue we can think of to find people to help with Mira, but the reality is, there aren't a whole lot of available people out there, even for an evening. It's a busy time of year with school starting and schedules filling up.