Unpredictable

We all know by now that Dravet is unpredictable and always changing. Especially while kids are young. Take this week for example. Cole has been doing really well, only needing a small dose rescue meds a couple of times a week for the last couple of weeks. Wednesday he had a lot of small seizures and struggled near the end of school and into the evening. Schools have been closing for Norovirus out here and I decided to keep him home on Thursday just in case he was getting sick. Thursday rolls around and we are supposed to have beautiful weather. 70 degrees! I couldn't just stay in the house, and Cole was doing really well, so I pulled a spontaneous trip to the zoo for a couple of hours out of no where. I was supposed to be going over to a friends house for something, but we ended up convincing them to come with us! Who wouldn't like to skip school to go to the zoo? (Mind you, their mom is responsible and we waited until they finished school to go).We were only there for an hour, which some people would say is not worth it, but we had a good time. Cole did great and Slugger was as much of an attraction as the animals on display. Everywhere we went, we heard kids say, "Look! It's a dog!" Who cares if there are lions and tigers? There's a dog here! :)

The animals seemed to get a kick out of Slugger too. Especially these donkeys at the children's farm. They were not paying any attention to the masses of pre-school kids on field trips, but when we walked up all 4 of them ran up to the fence and were totally interested in Slugger!Can't you just hear them say, "Hey, man! How did you get on the other side?"We came home and Cole ended up having a really weird seizure where he curled up in a ball and was extremely sensitive to touch. Never seen that kind before. Regardless, I sent him to school on Friday since it was one of his friend's birthday and he had been doing fine all morning. I was in the bath when I saw the nurses name pop up on my phone (yes, people..I bathe with my phone. I need to hear it if Cole is having a problem in school). I knew it must be a seizure, so I jumped out, dripping hair and all and ran around getting dressed while she explained what was going on. It took me 6 minutes, a little longer than usual *wink* , from the time she called me to the time I got there. Yeah, I am sure that I was quite a sight! Mascara circles under my eyes, looking like a drowned rat. I never could pull off the wet look :) So thanks Dravet, for reminding me that I do not have the right to shower-even if I am alone in the house.

This particular seizure was, once again, different than what we have been seeing lately. He bit his tongue, which he has only done once before, so he was bleeding (me-I am not so lucky). He also just passed out and went into a full tonic-clonic, no small leader seizures. He used to do this all of the time, but it has been a while since he has just fallen on his head. He has a nice bump to match the permanent one on the other side. A constant reminder of the days when he used to have atonic drop seizures and would hit the same place over and over as he fell. Lots and lots of drool and for a while I thought I was going to have to take him to the ER for suctioning. Even after the seizure stopped, he was really junky and I could hear rattling in his lungs. I was pounding on his back and encouraging him to swallow, but he was unconscious. I was certain he was going to aspirate. Every time without fail, when we go to the hospital (no matter how long we are there) Cole picks up whatever is floating in the air. So you can understand why I was hesitant to pack up and possibly make things worse. After a 3 1/2 hour post ictal phase, he woke up and was able to clear the phlegm. Thank goodness!

So, same jacket, different day. Same little boy, different conditions. Through all of this though, Slugger remained a constant. He alerted 45 minutes before the seizure and then again 10 minutes before. The nurse didn't recognize the first alert, so I guess he really wanted her to get the message. We are so grateful for him. Thank you again to anyone that helped to make Slugger a reality. He has made things that are so out of control and unpredictable, a little easier.