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9:30 PM (Randall posting): Well, it seems as if the drugs are already kicking in. At least, I'm hoping it's the drugs and not something else that is going on. We'll find out tomorrow when we go to the clinic for Sophie's PEG shots and I'll get the chance to talk with the folks there.

Sophie's appetite has been off all day. She is definitely interested in food, but only in small amounts. By this afternoon, she was asking for Clifford soup, eating barely half a bowl, and quitting. Five minutes later she was asking for more food. I'm glad she's eating throughout the day (especially because of her risk of having hypoglycemia), but I worry that she's not eating enough when she does eat.

This morning Sophie lounged around the house, moving back and forth between the couch and the bed. She was not terribly excited when Rebecca came to sit with her, and barely paid any attention to her the whole time I was here. About mid-morning, Sophie said she wanted to take a nap and I took her back to her room where she fell asleep. That is not normal for Sophie. I remember, however, how lethargic and pitiful she was the last time she was on steroids. I never expected it to hit this suddenly, though.

Susan and Elisabeth seem to be doing well where they are. Susan had a long day of interviews today (12 hours, I think) and Mom is doing a bang-up job of wearing Elisabeth out. The excitement in Tennessee today was that my niece, Ashley, flew in from Texas to stay with Mom for a few days. I'm sure Elisabeth will quickly bond with her cousin that she doesn't get to see too often. I hope Ashley can handle all the attention (actually, I'm sure she can).

Two more days and the ladies come back Saturday night. I'm home alone until then. Sophie will probably continue her eating and lounging, and, if all goes well, I'll continue to make some progress on my paper. Remember us as we go to the clinic for Sophie's shots tomorrow morning. I had a long talk with her about that today, about what to expect and about how the shots are important to make sure she stays healthy and so on and so forth. I hope preparing her for something traumatic is better than springing it on her. Nevermind. I know it's better than springing it on her. Sophie seemed to really soak in our whole discussion about the shots today. She never got anxious or worried at all. We'll see how she does tomorrow!

Something to be thankful for: she will only need one more PEG shot treatment after tomorrow.


You are doing a great job looking after Sophie while Susan and Elisabeth are gone. I am glad to know that Sophie at least seemed to be paying attention to your talk, and yes, it does help to tell them the truth and try to explain what is going on and what will happen. It seems as though when it happens they remember what yu have told them and know they can trust you to tell them the truth instead of sugar coating it. As for her eating, that will probably get better with time. Some days we are more hungry than others and some days we just can't seem to figure out what exactly we want. Hope you have a good day at the clinic on Friday. As always, we will keep everyone in our thoughts and prayers and I know everyone is looking forward to the family being together again. Good Luck on the paper.

Hello. When Haley was on 5 weeks of steroids (Decodron) she stayed hungry. We could not fill her up. She actually gained 7 lbs. Her tummy and her cheeks were real swollen and her face started to break out. It also made her sleepy or sometimes just the opposite, hyper. After being off of it for a couple of weeks she lost the weight. The doctor told us that it would take about 4-6 weeks for it to get out of her system. When she smells certain alcohol smells it continues to make her sick even today. She also took Zantac since the steroids can hurt the stomach. Hang in there, you are doing a great job. I hope Susan is doing better and all arrive home safely. Laura