Mixed Messages

Sheena had a mixed day. She had a bad run of spasms around 1pm after being irritable for about an hour. They were coming every 5 minutes, so that was dreadful to watch. She was better in the evening, and seems to be less irritated in her face, and was able to focus on things for a decent period of time without grimacing. That has been one thing that she started doing since she's been on the Prednisolone medication. During her last EEG, I got them to specifically check that a grimace was not a seizure, and apparently it isn't 'epileptic activity'. I've read about another kid that also did hard-blinking in a similar way while on Pred. Only 1.5 weeks to go until she is fully weaned. I can't wait. It will be a big milestone in her treatment.

We hung out with the Street family today and went for a couple of walks - all rather quiet.

We're feeling really restricted in our activities with Sheena being sick for so long. We still manage to do a lot really, but not half as much as we'd like to be doing. Some people have said to us that it is like this with any new parents, but ours is an exaggerated situation, so it is not the same at all. Things are slowly getting better. Now that the constant moaning/crying has abated, I am feeling able to take her out to meet friends.

Here is a picture of my new kitchen especially for Rebecca C. That yellow paint is going next.