Thank you

Thank you for the positive response to my 'helper list', I wasn't sure about the whole idea, after I wrote it.  But now I'm feeling good about it.  I can't promise that you'll get a phone call, but I can promise you that I will make a call when the need arises. 

Hope has not changed much.  She still turns blue (mouth, hands, sometimes feet), when she has a seizure.  She turns almost purple when we change her diaper, but starts breathing again when we turn her on her side.  We don't sit her up AT ALL.  No chair and no carseat.  The wagon works well for her, when we go for a walk.  She still sleeps most of the time.  We increased her phenobarb and because the seizures have decreased a bit, she has had a few awake moments.  In fact, she had her eyes open for about 2 hours one morning, but only once.

I still like to bath her and braid her hair.  This was taken a few days ago, when Hope could tolerate a bit more movement.