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.

Saturday, January 5, 2013

1 year ago today.

1 year ago today my mom laid me on the operating table to start the first of my two brain surgeries. This was the surgery where they put the electrodes on my brain in order to see exactly where the seizures were coming from. The surgery went well and I went to the PICU. It then turned into the worst day of my life. They had held my seizure meds and I was having lots of seizures. They were the worst seizures my mommy and daddy had ever seen me have. Not only was I having seizure but my mommy couldn't hold me. I had way to many wires coming from my head plus I had just come out of surgery. All she could do was lean over my bed and put her head as close to me as possible. Its a feeling my mom will never forget. It was honestly the worst thing we have been through as a family. Its so hard when your child is in pain and there is very little you can do. My seizure got so bad that the doctors immediately said they had enough information and to put me back on my seizure meds. For the next couple of days I stayed sedated most of the time. If I was awake I was having seizures, crying, and in lots of pain. It was at this point that we were wondering if we made the right decision. I can tell you 1 year later that it was definitely the right decision. I'm attaching a picture of me right before I fell asleep and we walked to the operating room. I'm sticking my tongue out to show them what I think about it.

Love ya, Jadon

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