And so it begins, again...

We are on the hunt...once again...for a med that works for our son. He has had 4 generalized tonic-clonics in the past 6 days, as well as hundreds of myoclonic seizures. Every time we adjust his meds or try something new - we have a "honeymoon period." It usually lasts about a week and then we're right back to where we were. So we're going to raise his Stiripentol - again- and see if that works. It's always a balancing act between gaining control over his seizures and causing a drunken-like stupor that impedes his development. So we'll see. Is going from 4 seizures in 7 days to 2 seizures in 7 days worth having him be a zombie? Probably not - Ugh!!! I hate this disease!! It is so hard to watch him suffer and wonder if this is the day where we start to lose him...and not be able to do a thing about it. It really makes you realize how little you actually can control. And that is where trust comes in - trust that God knows what He is doing. You hear that all of the time - and it sounds so trite -except in moments like these - when it is the minuscule line that keeps you from going over the edge - when there is nothing left but trust.