Wow - what a day.  Seven big seizures.  I just gave him some diastat.  Ugh.  He was doing so well.  I just hate that valium - it does such a number on him.  For the first time ever, though, I got a whole seizure on video.  And I felt it coming on - grabbed the camera - and I was right.  He started to breathe funny, quiver, looked around -- and about 30 seconds later it started.  Here it is.

It is such a nightmare on these days.  I had no help this morning and from 6am on Cody went down with seizures and I ran between him and Casey.  My friend Carol arrived at 9am to help clean my house and provided some help with Casey.  Then my sister came up at 10:30 knowing I was desperate.  Poor Cody had a seizure in his swing, on his trike, during sleep.  It is just so so so hard.  I hate these days.  I pray tomorrow will be better.  Funnily enough, he was still using PECS all day despite the seizure activity!  That's my trooper!  He's so excited to be able to communicate.

That's it for now - please keep him in your prayers if you would. 

love,

Shawna