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10/3/05

9:00 PM: I've been at work much of the day, so Randall probably has a better idea of the details of Sophie's day than I do, but here I am sitting at the computer, so I'll do my best. Sophie said she had a good day with Tesha, playing "school" and laughing. Today was Sophie's last dose of thioguanine (she took it for 14 days), so for now our daily medicine will be down to septra (an anitbiotic) three days a week, and we won't need to give her anything for nausea. She's a real trooper about taking medicine, but it will be nice to have one less thing to worry about and remember.

Lately, we've been having to use more tape than normal at the top and bottom of her dressing, because it doesn't seem to be sticking well. We changed the dressing tonight, and her skin was bleeding a little bit where she pulled the tape up (apparently the tape sticks well, even if the dressing doesn't). This time we used a dressing called Tegaderm instead of the IV3000 we had been using. Tegaderm is what we used originally, and we thought a while back that it was irritating her skin, but it seems to be a little more adhesive, so we'll see whether it holds up better during the course of the week. If it seems too painful when she pulls it off next week, we'll go back to the IV3000 and extra tape. I'll be curious to see how that goes.

Elisabeth went to dance class tonight, and for the second week in a row, she became hysterical when Randall dropped her off and prepared to leave. Randall packed her back into the car and came home, feeling quite frustrated. They had a good talk when they got home. She had wanted to take two classes: jazz and clogging, both of which are on Monday night; one at 5:00 and one at 7:00. We usually pack a dinner for her, and she eats between classes. She told Randall that she wasn't enjoying clogging as much as she thought she would and that she didn't enjoy that hour between classes. So the new plan is to stick with jazz on Monday nights and take ballet on Tuesday nights. We prefer ballet to clogging, so although it means two trips to town, we think this will work out better. We're thankful that Janice was willing to let her switch (and we're also thankful that we had borrowed the expensive clogging shoes). I'm glad Randall was able to help her come up with a plan we can all live with.

You may have noticed that we slightly changed the look of Sophie's weblog tonight. We've added a bit of color and a photo to the main index page. We'll continue to play around with the design, and we're also trying to come up with a better title for the site than "Sophie's Health Updates." If you have suggestions, please share them (in comments or by e-mail).

Comments

Hey!! I am so glad things are going well. Sophie is so brave - God has great things in store for her. We had a similar problem with Haley and dance. She's not taking this year. It became such a chore to take her and it's supposed to be for fun. We made a mistake by having it at 4:oo on Mondays. She was always tired from a long day at school and Mondays are always manic anyway. She doesn't seem to miss it and is enjoying art class and piano. I am so glad this phase is almost through with for Sophie. You guys have done a great job with Sophie. You are an inspiration to many! Haley has a MRI on October 20th please keep Haley in your prayers. Laura

Though I haven't been commenting everyday, I have been reading everyday and your family is in my thoughts. I hope that the new dance schedule will be better for all. Sometimes it is hard for kids to know and articulate what they don't like about a situation, so I'm quite impressed that you've gotten such a good indication!

Hi Randall and Susan - I just wanted you all to know you continue to be in my thoughts and prayers.

Your girls are absolutely beautiful! And, they sound so smart!

God Bless you all,

Patricia

i like green :) its pretty! ((HUGS))