Drake's seizures are on the increase again. He's been acting a bit spacey most days and we think we're seeing several absence seizures daily again. Wednesday night he had a pretty nasty seizure that started in the bath (OMG those are scary!); it required Diastat to stop it - the second time this month. The neurologist ordered more blood work to see what's going on with his med levels. We see the Neurologist next week to review last monthes video EEG, discuss the recent changes and decide where we go from here. It's always a roller coaster with Dravet.
This morning we went to get that blood work done. We've been to the lab enough now that the techs new who we were the moment we walked in. They were thrilled to meet Sushi. It was the least stressful trip to the lab ever - thanks to tethering! Usually Drake is all over the place, climbing on people and trying to get back behind the desk to "help" the techs as I'm filling out paperwork. Today, Drake was tethered to Sushi, so he couldn't wander. They both did wonderful.
Afterwards we went to Panera for hot chocolate and coffee. Again, a wonderful experience thanks to Sushi. I left Drake tethered while we sat at the table, and while Drake got up from the table several times, he couldn't get very far. Realizing that he wasn't going to be able to just wander and say hello to all the business people there, he eventually laid down on the floor and cuddled with Sushi. One very kind woman stopped by our table to ask about Sushi and Drake. She told me she is a speech pathologist and works with deaf children. She was amazed by Sushi and how much she was clearly helping Drake (and me). It was so wonderful to be able to sit and have an actual conversation with someone while out with Drake - in the past I would have been so stressed from chasing him down and would have given up 10 minutes into the trip and headed home.
We've got a bit of snow here. In the past, Drake has despised being in the cold and snow, but today he was showing a definite interest in it. I think we're going to bundle up and go play in it for a bit now that he's up from his nap. :)
This morning we went to get that blood work done. We've been to the lab enough now that the techs new who we were the moment we walked in. They were thrilled to meet Sushi. It was the least stressful trip to the lab ever - thanks to tethering! Usually Drake is all over the place, climbing on people and trying to get back behind the desk to "help" the techs as I'm filling out paperwork. Today, Drake was tethered to Sushi, so he couldn't wander. They both did wonderful.
Afterwards we went to Panera for hot chocolate and coffee. Again, a wonderful experience thanks to Sushi. I left Drake tethered while we sat at the table, and while Drake got up from the table several times, he couldn't get very far. Realizing that he wasn't going to be able to just wander and say hello to all the business people there, he eventually laid down on the floor and cuddled with Sushi. One very kind woman stopped by our table to ask about Sushi and Drake. She told me she is a speech pathologist and works with deaf children. She was amazed by Sushi and how much she was clearly helping Drake (and me). It was so wonderful to be able to sit and have an actual conversation with someone while out with Drake - in the past I would have been so stressed from chasing him down and would have given up 10 minutes into the trip and headed home.
We've got a bit of snow here. In the past, Drake has despised being in the cold and snow, but today he was showing a definite interest in it. I think we're going to bundle up and go play in it for a bit now that he's up from his nap. :)