10:00 PM (Randall posting): Today has been another long Sunday. Susan and I just got home from date night, and the girls are both still awake. I guess we're not surprised. Sophie has been so off schedule these last couple of days that "bed time" is a completely foreign concept to her--I mean, what would you call bed time for a child who crawls in bed at least five or six times a day?
Sophie has been really, really wiped out today. This morning in church, she looked so pitiful and eventually just laid down in the pew and rested. Everybody commented on how puffy she looks and how tired she seems. It's actually quite hard to have other people point out these changes in Sophie. She's clearly not herself. I took a picture of her this evening. Maybe tomorrow during the day I'll get it uploaded and we can do a before and after shot of Sophie on steroids. She has become so heavy it's noticeable just to pick her up. She also has become very aware of how crummy she feels (although she doesn't seem to be too concerned with her appearance).
We've been getting up pretty consistently twice a night with her--once around midnight and once around 4 AM. Last night at midnight I was still up (not working on my sermon, mind you, but I couldn't sleep, so I was just watching TV). She was so sweet and so polite and patient. It actually was quite pleasant to sit with her at the table while she had a "snack."
One week from tomorrow is the last day of steroid treatments in this phase. We're hoping this time will be the most challenging of this particular round, but we still have a long, long ways to go. Thank you for all of your comments and prayers and encouraging words. It means a great deal to us to know that so many folks from so many places are thinking about us and loving us through this time. We are all hanging in there as best we can and praying for the strength to face tomorrow.