Wednesday, January 27, 2010

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.

2 comments:

  1. Thank you for sharing this, Katherine. It's wonderful how open you are about your struggles. I know that I was inspired by meeting your family. I'm sure there are others out there facing similar challenges, or really any challenge at all, that feel the same way. I hope the baby, and the whole family is doing well. So happy for you about the reprieve from seizures!

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  2. Good to hear that little Kael is getting a break! It is really striking to watch the video and see how calm and quiet everyone remains. What a sweet, precious child! Our prayers continue daily.

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