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.
Monday, March 24, 2014
Can I just answer everything with "I don't know!"
Can I just answer everything with "I don't know!"? I'm so lost and feel like there are so many questions coming my way. I'm supposed to gather all kinds of information for Medicaid so that Jayen can stay on the waiver, but feel I don't know where to start. There are so many forms and so many people I need to contact to get those forms and forms I have to fill out so I can get more forms. I'm lost in paperwork and trying to swim my way through it. I'm also trying to figure out Jayen. Who is this new kid? We have had two seizures since surgery and both have been afternoon seizures. I'm not sure what to do about him going back to school. I know I need to figure it out, but I have no clue what to do. I think he still needs almost constant supervision. I'm worried about his stamina during the day, but don't know whether he should start out for an hour, every other day, or if he should just wait altogether. There are so many questions and not a lot of answers. I am just going to start saying, "I don't know!" and make Matt answer everything!!!
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