About Me

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.

Friday, May 25, 2012

Are you f-ing kidding me?


I can't believe on Monday we were one year seizure free and now we have these. Jayen came into our bedroom to wake us up, I'm so glad Matt was home to see it with me, he was laying beside Matt then suddenly started staring off and couldn't control his arms. Matt tried talking to him and asking Jayen to complete simple tasks, like high five. Jayen understood that someone was talking to him and would turn towards Matt's voice, but was unable to complete the task. It was very strange, but we both knew instantly that we were dealing with seizures again. I worry that since it is such a blank stare that others will not be able to recognize that they are seizures. They last so long too. We are supposed to give Jayen diastat after 3 minutes, but I will try to avoid it at all cost. What is going on. I'm so heartbroken and can't believe we have to go through this again. Jayen is just started to make more vocal sounds too. I pray that this doesn't set him back. I pray that we can stop these quickly. I pray that this horrible disease doesn't affect him for the rest of his life. I pray for a cure!
Go away seizures and NEVER come back!

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