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.
Thursday, June 25, 2015
Chain forever attached to us
Today I am tasked with trying to pack all of us for our mini vacation. I've packed us numerous times; for grandma's and grandpa's, for camping, for extended hospital stays, for out of town weddings, for moves half way around the United States. I've packed us numerous times, but this one stopped me and some how made me fall to my knees. It wasn't where we were going, it wasn't the clothes that keep getting bigger (the kids that are growing too fast and the waist mommy can't seem to get rid of), it wasn't anything I packed, it was what I almost forgot to pack. Jayen has been doing so well lately with seizure control. So well, we often don't even mention it for fear of ruining it; which is a whole other issue I often cry about. Jayen has been seizure free since November 2014. Yes I knocked on wood, crossed my fingers, toes, and eyes while saying that. He is still on his same drug regimen of prescription cocktails but there is one medicine in the cabinet that is the bane of my existence. It is not a medicine that keeps the seizures away, but an emergency medicine for when the seizure happens. It is just that, for emergencies. My son has not had an emergency for over 6 months but this medicine in my cabinet haunts me daily. When will I need it? Where will I need it? Will I have it with me when the next one strikes? In my heart I am hopeful, but I also am realistic and know that some day these things will come back. I pack his prescriptions without hesitation, but pack his emergency medications with the heaviest of heart. I know no matter how long we are seizure free this chain will always be attached to this medicine. We will forever be tied to this emergency medication. We will never be able to escape it.
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