Back to Reality

Well, we had a nice little break for 11 days from seizures, but they came back, with a vengeance, on Thursday. He had a few myoclonic seizures on the way home from school, which made me wonder if he would have a GTC, since he hasn't had any myo's since his last GTC. Unfortunately, I was right. Friday was a repeat of Thursday. It seems like no matter what drugs or supplements we try, he always goes back to his 2 to 3 times a week schedule. To make things worse, it now seems like his myoclonics are back to being a daily occurrence.

The good news is that he is growing leaps and bounds developmentally. Kael says many, many words, but it has always been difficult to get him to say sentences. This week, unprompted, he said about 5 different sentences! So we are thankful for that.

Really, we have so much to be thankful for...He's still here, he's happy and loving, and he is still progressing.

Another great thing...he is FINALLY acknowledging his baby brother!

Video of one of Kael's seizures

Beginning Kael's Blog

Ok...so I'm going to try to start blogging about Kael. It's so hard to keep people updated as to his condition..so I'm trying this.

Good news - it's been 10 days since Kael's last major seizure!! We don't know why we're getting this break..we changed his meds about a month ago, doubled his dose of Blue-Green Algae, and last week we added Mangosteen, a supplement, to his diet...maybe it's one of those. Or maybe we're just finally getting a much needed break after 3 weeks of fever and out of control seizures. Whatever the reason - we'll take it. It's amazing how quickly we get used to no seizures. I start thinking about what life would be like if he was seizure free...how I wouldn't have that sick feeling in the pit of my stomach all of the time, how we could go to the park without having to be right next to him, how I wouldn't wake in the middle of the night, feel his cold skin, and wonder if he had died during the night. But for today, I'm just happy to have a break.