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.
Friday, September 12, 2014
Let the countdown begin
I received a call today from the EFMP office here at Offutt concerning Jayen's travel to Luke AFB in Arizona. I wasn't prepared for what he was going to tell me. Jayen's travel was denied. He is not allowed to go. They feel they do not have the facilities comparable to the care he is currently receiving in Minnesota. What they heck. You just sent my husband away for three months and now you are telling me it could be for nothing. I'm not sure what this means for us. I was informed that we have 21 calendar days to appeal this decision. We are so worried! We have done all of our research for Arizona. We have found what we felt was appropriate service. We are going to appeal the decision. I'd love to stay here but staying here could mean losing Matt for an entire year. I'm struggling with the couple days he's been gone already, a year would be impossible. I guess we can add one more thing to my plate. As if keeping three kids alive, painting, staging, and getting the house on the market, and now appealing this decision weren't enough.
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