Friday, June 23, 2017

Dystonia Days

Mira has had a few more episodes since the beginning of the month - her typical days of heavy dystonia, intense seizures, and lethargy. She started school last week, which seemed to break the cycle of her having these episodes, but she then had another at the end of last week. We have been getting out for walks quite a bit, but Mira has started to relentlessly rub her eyes again every time we are outside. Sarah was out with her in the van earlier this week and Mira pulled glasses off and threw them on the floor, which is not uncommon. After that, she would not stop rubbing her eyes, which prompted Sarah to pull the van over to put her own sunglasses on her to keep her hands off her face. We thought she had stopped this awhile back, but with the intense summer sun, we are back to developing strategies for shielding her eyes.

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

Rough Thursday

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.