Friday, March 6, 2009

CDKL5 controls our life

Jen left for school happy this morning, she was out of school yesterday for an appointment, and I thought she would make it through the day. Unfortunately Jen had a terrible day of seizures and the nurse wanted me to pick her up instead of taking the bus at 5:30. Sounds easy, but this is getting to be quite a routine. I need to find someone to travel with me (at least 2 hours round-trip), change plans, rearrange schedules, not have dinner ready, etc.
Jen's day effects everyone's day in the family. Everyone's.....
We all get through it, but Jen's seizures are uncontrolled which means our family's life is uncontrolled. It would be nice to get everything back in control!

No comments:

Post a Comment