This is the reality of Ethan living with AHC.  All of the best laid plans are out of the window when Ethan ‘goes down’. So no TV interview or fun time hanging out with mom this week.  It’s so frustrating watching him lie there and there is nothing we (or anyone) can do to help him.  

AHC causes painful dystonic and hemiplegic episodes and when these happen everything stops for all of us as we try and get him through it.  These episodes render Ethan unable to move, his body is a mix of floppy and stiff at the same time from his mouth down.  No drinking, eating, talking, sitting or standing.  He is completely aware as he is stuck in a body he no longer has control over.  I’ve tried doing this a few times in my life, putting myself in his shoes, lying there and no moving any bone in my body, it is terrifying and very uncomfortable.  Image needing to get comfortable, you can’t move and can’t tell anyone you need to move either. 

He has been having these episodes on and off since yesterday.  The only thing that provides relief and can break his episode is sleep and sometimes like now it doesn’t work and we have to wait it out.

This is one reason why we want the Trexo so badly for him.  When he is at baseline we want him to have the opportunity to move and do those things that we take for granted, because when he is in his episodes and has had everything taken away from him it’s heartbreaking. 

At least he can watch his iPad and that gives him something else to focus on.  Hoping he comes out of his episode soon. It’s nice that Piper keeps him company too.  It’s like she knows he’s not well.