Friday, June 23, 2017
This past week she has been fairly quiet, taking some long naps in the afternoon. She has been having a ton of myoclonics throughout the day, which are startling, since they happen so randomly and are impossible to prepare for. Her appetite has been decent and her temperament has been tolerable as well this past week, which is great, since we are gearing up for a day road trip on Sunday. Jonah is really excited about going to the Eisenhower Museum in Abeline, which is a straight shot down the highway for us, about 2 1/2 hours away. Jonah has been talking about it for months, right after we went to the Truman Library here in Kansas City. Hopefully, Mira will be in good spirits for the ride.
Friday, June 2, 2017
Yesterday, Mira had one of those days - tons of seizures and full of dystonia. She started off the morning by having a fairly intense seizure, which didn't quite evolve into a full blown tonic-clonic, but we could tell something was brewing. She managed to to drink one bottle before going back in her bed, but soon after that, things went downhill. She had 3 involved tonic-clonics, each about an hour apart, then became extremely distant and unresponsive, complete with clammy hands and feet - a very typical bout of dystonia for her. Sarah ended up giving her a round of Diastat later in the afternoon, after her third tonic-clonic, in order to break the cycle. The Diastat worked, as it ultimately stopped the seizures she was having consistently every hour prior. She ended up being out of it the rest of the afternoon, not managing to eat much until bedtime, where she finished 2 bottles, very slowly. By this morning, she had rebounded very well and had a enormous appetite after not eating much at all yesterday. She has been sleepy most of the day, which is expected, after such a rough day yesterday.