It's all about E.: Seizure Watch

I'm sitting here, officially on "seizure watch". Ethan had an abnormally rough night of sleep last night, which I now realize, he probably wasn't feeling very good. This morning, my friend Becky, and her daughter Brynlee came by to hang out. Becky noticed that Ethan was feeling a bit warm. Sure enough, he had a 100.3 fever. Inside, I immediately started panicking. He's had febrile seizures on 2 occasions, each time ended in an ambulance ride, and at least 1 night in the hospital. As you can imagine, the onset of a fever now causes me a bit of anxiety. Obviously me being anxious and stressed out doesn't help anything. Instead, I decided to "Mom Up" (you can read about my new favorite phrase here) I washed my hands, gently administered his tylenol suppository, and went back to bff chit chat. Now, Ethan is napping, laying next to me on my bed. I'm watching the Australian Open, and trying not to freak out at every little twitch. It doesn't make sense to me that if the fever is being controlled, that he still might have a seizure, but both my pediatrician, and neurologist were very clear that Tylenol does not prove to prevent febrile seizures. So, for now, we treat the fever, try to keep his fluids up, and just keep a very close eye on him.

Other than not feeling so hot today, Ethan's been doing great. He's got such a strong desire to move. He's working hard at trying to pull himself up to stand. He's still not quite able to do it, but his efforts are unmatched. In the last few weeks, Ethan's had a "Modified Barium Swallow Study", saw the Neurologist, and his pediatrician. During the swallow study, Ethan was hooked up to a live xray machine, and was fed liquids of different consistencies with die (barium) that showed up on the x-ray machine. It was really neat to watch. On the x-ray, would could see from his shoulders up. I was able to see his 2 year molars, sitting below his gums. They started out giving him thick chunky pudding, then a thick milkshake, then thinner milkshake, and ended with a juice consistency. He did well with everything except the thin juice. He doesn't actually swallow it, he lets it fall to the back of his mouth, it stops in his throat for a few moments, and then goes down his esophagus. They said that the way he moves food around his mouth, and swallows is a bit immature. This likely has to do with the low muscle tone, and just goes along with the rest of the delays.

The Neurology appointment went well. The Neurologist said that as long as Ethan has a fever anytime he has a seizure, they will continue to assume he has febrile seizures, and not a seizure disorder. He agreed with the pediatrician, that anytime he has a seizure he needs to go to the ER to have blood work done. Because of his metabolic disorder, anytime anything traumatic happens they need to make sure that the acids in his blood aren't out of control.

All in all we're doing pretty well. We've been filling our days with play dates, working out, working, and just living life. Things seem pretty hectic, but we're enjoying it. :)