Jadon's Infantile Spasms Story

I created this blog so that our friends and family will be able to follow Jadon as he fights to overcome Infantile Spasms. I also hope that if anyone else is going through this, they will find this site helpful. I have posted a video of what infantile spasms look like, as well as everything we are going through. I hope by posting this I am able to get help for other children who are having these spasms. The earlier this is diagnosed the better. Feel free to leave me comments. I love to hear from you. If you have any questions just email my mommy. She likes to help people in any way she can.

Sunday, June 13, 2010

Seizures, seizures, and more seizures :(

I wish I could post better news but this is what is going on. My seizures continue to increase each day. I have them everytime I wake up now. This is about 4 to 5 clusters of 20 or more twitches. This does not include the ones I'm having at night. This morning I woke up at 8:00 and didn't stop having seizures until 9:30. This is very scary for my family to watch. I do continue to be very alert and very happy. I'm not sleeping again. I have been up the last two nights for about an hour or two at a time. You see I always wake up at night for my nunu. Usually mommy just gives it to me and I fall back asleep but now I'm having seizures and can't settle back down. My mom is calling my neurologist tomorrow so we will update you and let you know what she says. I also have my cardiologist appointment tomorrow. It's not until 2:30 so I will update you as soon as I can. You know I always like to leave you with good news so here it is. My mom has been letting me swim every afternoon. We wait until about 5:30 when there is shade on the pool. I absolutely love it. I get excited when mom puts on my ring because I know what is coming. Since I have been doing the water therapy I am rolling over like crazy. Mom says this therapy is better than any therapy she is paying for...lol

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