Who'd Of Thunk It?

This time last year....
We had just barely gotten rid of the drop seizures. Were cautiously going without the helmet. Full fledged on keto. Finally had an oxygen concentrator in the house. Were seeing an increase in overstimulation issues. Only using Versed, Diastat wasn't working. Were still on house arrest. Lived in the west. Still didn't have official Dravet diagnosis.

Now...
Have a g tube. Not on keto. Have not only oxygen, but two pulse oximeters. Have 5 rescue meds we are rotating. Dravet. Have nurses. Free from prison. East coast dwellers.

Yesterday Cole swam in a chlorine pool, outside. Went to a restaurant. Then met up with some Dravet friends at IKEA...all in the same day, and without a nap. Normally, just one of those things would have been considered super risky and would have most likely caused a tonic-clonic seizure and a day of recovery. Today? He's fine and dandy. Slept for 13 hours because he had too much fun, but up and bright as a light bulb!

Mind you, he wasn't totally cooperative during his swimming lesson. Climbing in and out of the pool. He was also terrorizing the restaurant. Trying to use the carpet sweepers to "clean", running to the waitress station and trying to push the keypad. Wanting a credit card so he could slide it through the designated slot. Laying on the filthy floor instead of eating. A nice person who was staring at us the entire time, stopped by and told me that she thought he was adorable and that her son used to act just like him. She told me how that son is now in a Level 4 Gifted and Talented Program, so it meant good things that Cole was so "busy". Hmmm....didn't want to hurt her feelings, but we know better. He ran around IKEA like he was being chased, knocked over a few displays and got into a little trouble with a suitcase. Still, he did it. We did it.

The perfect place for an impromptu family reunion! Some were visiting from the southern part of the state and we couldn't miss the opportunity to see them.Who would have ever thought it was possible? I sure didn't this time last year.