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8:00 PM (Susan posting): We certainly appreciated the outpouring of support we received (through comments, by e-mail, and by phone) in response to last night's weblog post. It's really nice to know that you all are keeping up with us and understand our highs and lows.

Last night after I posted, I gave Sophie's hair a trim (cut about an inch off the bottom and her bangs). It sure is easier and faster to cut now that it's gotten so thin. She looks pretty cute with shorter bangs. The steroids are definitely causing some water retention. Her cheeks are getting big, and her stomach is really sticking out. We bought her size 4 panties over the weekend, and we'll try to keep her in dresses for a while so that she won't be restricted by tight waistbands. She went to sleep at about 6:30 tonight, but we'll have to wake her up later for her evening dose of steroids. I hope she'll go back to sleep pretty easily.

Randall was able to go to Duke today to do research for his paper. He thinks he can finish off the paper without going back for more material. I was able to work pretty well at home with Ashley watching the girls (her brother Nick was here for a while too). Sophie pretty much refused to have anything to do with Ashley for the first couple of hours. Ashley finally got through with a food offering. Ashley spent much of her day catering to Sophie's food demands. And I can tell you that if she doesn't get exactly what she requested, she will have something to say about it. One time when she asked for soup, I gave her Dora soup instead of Clifford soup, and I thought I would never hear the end of it. Luckily, Elisabeth was willing to eat the Dora soup, so I was able to give in without totally caving.

We're nearly packed for our trip to Virginia. We will try to update the weblog while we're gone, but if I can't get connected to the internet or the phone line goes down, I won't be able to do it--so don't worry if you don't hear from us every 24 hours.


Hey. I'm glad you sound much better today. I know that you all have so much going on, just know that you have many people who support you and are willing to help in anyway. I remember when we had to give Haley Decadron and she hated it!!! We had to buy Skittles bubblegum and/or Fritos to chase it with. Dr. Herring told us about the Fritos and don't ask me how we came up using Skittles -it just worked. We had to also use a Medication chart with stars for incenitives. At the end we bought an American Girl doll. Imagine that! Anyway, I don't know if you read the comments while you were in Seattle but, Haley's tummy was very swollen too. We actually had to go up a size and she gained around 7 pounds. Now those clothes fall off of her. She also had very chubby cheeks and a rash on her face. All due to the Decadron. It took about 6 weeks for it to get out of her system. When I told Haley that Sophie was taking the same medicine as she did, she told me that that medicine made her feel terrible and very sleepy. We wish you all the best and have a safe trip. I wish there were more I could do for you all - I'll keep you close in my prayers. Laura