Almost 3 years ago Nicky escalated from absent seizures to grand mal, bringing a whole new layer to our already complicated world. Instantly there were more tests, more days in the hospital, more medicine, more monitors, more learning difficulties, more behavioral responses to the meds, just more; which I thought was simply our new normal.
I didn't imagine that one day, his doctor would say
"The medications are working. His EEG's have been normal, he's doing well and we can begin slowly weening him off the medications". I was stunned. Did he really mean GONE, as in forever? I just thought we were blessed his seizures were under control, but now we were talking about Nicky seizure free. We had an 80% chance they were gone for the rest of his life! I really did not know his doctor's goal was to eliminate the seizures. So when he said, "It's time, are you ready"? All I could think was, of course I'm ready. No more medications that can both help and harm him, no more monthly trips to the pharmacy, no more routine labs to check on medication levels and his organ functions, no more getting him to take four or more medications two times a day. I once calculated that I was spending 121 hours a year just grinding and blending the various medications. So when he asked if I was ready to stop, all I could think was who wouldn't sign up for that! What a happy day!
I didn't imagine that one day, his doctor would say "The medications are working. His EEG's have been normal, he's doing well and we can begin slowly weening him off the medications". I was stunned. Did he really mean GONE, as in forever? I just thought we were blessed his seizures were under control, but now we were talking about Nicky seizure free. We had an 80% chance they were gone for the rest of his life! I really did not know his doctor's goal was to eliminate the seizures. So when he said, "It's time, are you ready"? All I could think was, of course I'm ready. No more medications that can both help and harm him, no more monthly trips to the pharmacy, no more routine labs to check on medication levels and his organ functions, no more getting him to take four or more medications two times a day. I once calculated that I was spending 121 hours a year just grinding and blending the various medications. So when he asked if I was ready to stop, all I could think was who wouldn't sign up for that! What a happy day! 
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