With Ethan’s condition he has good days and some really bad days.  Today was one of those bad days.  He woke up around 8am, had his breakfast and then around 10am he had what we call an ‘episode’ and then another and another. He has been in full body paralysis all day long.  He is fully aware during this time, but unable to move, talk or drink.  Sleep is his only relief and today it didn’t help very much.  When he has these days it’s really hard on everyone, especially Ethan.   Any plans we may of had are out of the window as we make comfortable and sit by his bedside to make sure he is safe.   He has such a hard time of it, it’s just so unfair. 

He’s asleep now and we are hoping he will be back to himself tomorrow.  

Take care, Claire