I find myself making little adjustments to my daily routine. I know the reason why, but it is interesting to see how the routine changes because of Maddy's seizures. Lately the seizure activity has occurred after a shower and I now find myself either showering first, or waiting about 20 minutes after she is out before I will take mine. Time goes by much slower now after she showers and I find myself being thankful each minute that goes by seizure free.
Looking for patterns has been a constant for us since the seizure activity first began. When she has a seizure the first questions are:
Was it the same time of day? Same weather?
Did the seizure last the same amount of time?
Was the seizure the same as the last one or different? How was it different?
How long has it been since the last seizure. Are we entering a consistent seizure cycle?
Did she do anything unusual? Was she extremely tired, upset or excited?
Could I have noticed something and I didn't?
I have to make sure and take a step back sometimes because if I don't then I can become to afraid to let her do anything. That is not fair to any of us. Even though it is very difficult we let Maddy stay at home if she wants when we zip out to dinner or run a few errands. We are never very far from home, but it always lingers in the back of our minds.
Until there is a permanent cure for fix for her seizures we will continue to adjust our lives to allow her the most independent life she can have.
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