Sunday, February 21, 2016


I certainly didn't anticipate having nearly 70 degree weather here in Kansas City, in February. Saturday it was amazing outside and we took full advantage of it. After spending most of the week in New Brunswick, where it was in the high teens, coming home to a weekend of sunshine and shorts was fantastic. We tried to spend as much time as we could outside with Mira - we went to the park next door for several hours, then followed it up later with some walks around the neighborhood. Mira was loving it. Her legs were always in motion, kicking and stretching the entire time. She did not want to stay still. She was in a positive mood most of the day, but hit a fussy spell late in the afternoon, which is common. She kept having a lot of lightning jerks throughout the day, but nothing major. One of the things I noticed when we were outside, was that her eye-rubbing had decreased dramatically. Whether her glasses were acting as a deterrent or not, she only tried to rub her eyes on a few occasions and with some subtle redirection, it was manageable. Today we weren't able to get out, as the temperature dropped back down into the high 40's and the sun wasn't out much. Mira was having a lot of strong myoclonics in her bed too, which we thought it was better to not rock the boat by getting her outside. She was also pretty irritable today, possibly from the seizures this morning.

One of the things we are having to be more cognizant of with Mira, is transfers. While Mira's weight hasn't changed much over the past year, she is getting taller and more unpredictable while transferring her, especially into her bed. About a month ago, I was lifting her out of her bath chair and really twisted my back in the process, giving me some terrible muscle pains in my lower back, that took several weeks to finally heal. Today I was putting her into her bed and again I strained my back in the same exact spot. Mira's bed is a canopy bed, which zips on the sides, yet it is positioned in such a way in her room, that I typically transfer her on the short end, which is against the wall. It's difficult to describe without seeing it, but it requires some gymnastics to transfer her from her chair into the end of the bed. I think I am going to have to reevaluate which end of the bed to put her in. Transferring her on the side is easier, but when it comes to actually changing her or getting her dressed, it makes it more difficult. Mira tends to stretch out as flat as a board, which makes it extremely awkward to try and lay her down without straining. The bottom line is Sarah and I have our own methods for transfers and mine just isn't working so great these days - I am going have to make some adjustments with my approach, as my back is not appreciating it any more.

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