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.

Wednesday, February 27, 2013

HELP ME SLEEP!

Called Dr. Frost's office today. We just can't keep doing this. Last night Jayen was up from 2AM to 5AM. Then Brilyn woke up at 5 to eat. Mommy is running on empty, Jayen is running on borrowed time, and daddy is chugging through. Dalan seems to be doing ok, but I worry since they share a room. Jayen often climbs the ladder to climb in Dalan's bed at night so he is woken up multiple times. I think we might have to head up for an overnight in Minnesota again. I am just at such a loss as to what to do. I would love for the Felbatol to be gone. It is not helping seizure control and could possibly be adding to the insomnia. (It is a known side effect of the Felbatol.) We just all need some sleep and SOON!

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