We still saw the shaking, but it was less than yesterday. As he grew more tired, it definately increased.
But we got to play outside this afternoon - the neighbor kids came by and they played kickball. It is so sweet to see the bigger kids play with Ben. He had a noticeable moment when he was seizing for about 20 seconds while standing. (It's interesting how these seem milder but longer than the myoclonic jerks and drops.) I held his hand to help him retain his balance until it passed. The kids were all so sweet asking if he was ok. Once it was over they just kept on with the game. They just cheer him on as he tries to keep up with the big kids.
We are thanking God that:
- Ben hasn't had a tonic clonic seizure since Tuesday. :) :)
- We live in a neighborhood with great kids!
- The flavors finally arrived so tomorrow he gets to try a 'pancake'.
- I was able to cook and freeze a lot today.
- Ben will be seizure free so we can start the 2 year clock.
- His tummy will start to feel full - he is still crying a lot during the day about being hungry.
- God will continue to give us wisdom and guidance as we try to help our little guy.