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.
Tuesday, July 29, 2014
What? Disconnect somewhere!
I figured I'd give Minnesota Epilepsy Group a few days to get Jayen scheduled for his visit the first week in August. When I talked to Mary in admissions today, she didn't know anything about it. No one told her, she was looking through his file and couldn't find anything, then looked at the notes from our appointment with Dr. Frost and saw that it was noted but no one mentioned anything to her. So we just lost a weeks time in scheduling and getting referrals done. I was still confident it would go through, but was extremely disappointed I had to be the one to notify her of our admission. Well appaarenty Dr. Frost is booked SOLID that week and she had to get permission from Dr. Frost to add any more to the schedule. Oh boy, here we go. Bring it on. This has to work! The kids go back to school the following week, Matt leaves in five more weeks, and this is really the only possible time I can get someone to watch Brilyn and Dalan. Praying things work themselves out!
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