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, October 11, 2013

Peace of Mind

Seizure morning again. Daddy was still here so I had a little help. I'm just so worried that we are having these things in the middle of the night.
Met with Dr. Toth today to update him on everything we learned in Minnesota and just talk about it. I always feel at ease with him. I really feel like there are no dumb questions. I brought up my concerns about seizures at night. I just don't if Jayen is having seizures at night or if what happened in Minnesota was a fluke. I'm really worried and am having a hard time sleeping at night. The pulse oximeter seemed like a great tool to have. When having a seizure, typically, heart rate increases and oxygen decreases. The monitor would alert me at night if either of these occurr. Is that something we can get at home? I would love the peace of mind! I would love to know if we are having seizures at night. We have a video monitor that I often stare at until I eventually fall asleep, but it doesn't wake me if something goes wrong. Dr. Toth thought that was a great idea and was checking into it for me.
Trying to pass the days until we hear from the surgery board. I'm also trying to make sure I let everyone know that needs to know. A few more calls today.

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