This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Sunday, August 10, 2014
Such a rollercoaster ride!
Woke up at grandma and grandpa's house this morning and Jayen had a seizure. This one really worried me. I couldn't sleep so I got out of bed and went to shower. Jayen woke up shortly after and was playing with Matt but then decided to go wake grandpa (or just steal his money from his money jar beside his bed)! Grandma and grandpa said he was playing with them and they didn't notice anything "off" with him. Matt said he was listening to Jayen's footsteps and couldn't hear them anymore so he ran upstairs to check on him. What he found is what worries me. Jayen was at the top of the steps seizing. What if he was on the steps? What if he fell down? What if we all assumed he was with the other? This is such a rollercoaster ride of emotions with this kid. I feel like I live in fear of when something HORRIBLE is going to happen. Waiting patiently for Dr. Frost's call with the next step in this ride.
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