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5/22/05 AM

9:30 AM (Susan posting): Randall and Elisabeth just left for church. Sophie and I will stay home so she doesn't get exposed to anything. I hate to miss hearing Randall preach. We were also saying this morning that the timing of her blood test doesn't work well for us sometimes. Since Sunday is the peak of our week, there are times when her counts drop quickly, and we take her to church when we shouldn't have (like last Sunday, when the previous Monday, she was at .6 but the day after we took her to church, she was at .1). Other times (like today), we keep her home because her counts had been low on Monday, but for all we know, they are back up (but we won't find out until tomorrow). We try to err on the side of caution, and given the size of the church (average attendance of 45), there are probably worse things we could be exposing her to.

Last night after bath, I cut Elisabeth's hair another inch, and it looks pretty cute. We had a good night (although the girls took their sweet time falling asleep). We had to drag Elisabeth out of bed this morning at 8:45. I guess she was finally catching up on her sleep from staying up late on Friday. Sophie's appetite continues to grow. She ate five go-gurts this morning!

We continue to keep my grandmother, Estelle, and my mom, Mary, in our thoughts and prayers. Nannie is having multiple health problems, and mom is taking leave from work to take care of her full-time. They are both struggling, and we wish there was more we could do to support them directly, but we're stuck here and they're stuck there.


Susan, I am sorry that Nannie is not doing so well these days. I don't know that there is much I can do in the way of helping either. I am significantly closer than you are, but my schedule is so varied that I couldn't even say something like I could stay with her every Tuesday. Tell your Mom to ask if there is visiting nurse or companion coverage available for eight to ten hours a day the days she needs to work. Sometimes between insurance and Medicare the cost can be covered if there is a medical necessity for the client to be watched. I know that there are some Adult Day Care programs available in some areas too. I don't know a lot about them, but I think you essentially need to have supervision to qualify for the program. I know that some programs have group activities that they do as well as act as social stimulation for others. Maybe your Mom can ask if there are any that would meet Nannie's needs availabe in their area.
I agree that having Sophie's counts done on Mondays doesn't work well for you. However, I suspect, the blood counts are done for the convenience of the clinic and not you. I agree that you may inadvertently expose Sophie sometimes and keep her isolated at other times that aren't necessary. Given the fragility of her immune system as the result of chemotherapy, my motto would be, "When in doubt, don't." The problem with going to places like church or other places where there are crowds of people including children is that some folks may not be ill at that moment in time, but be shedding bacteria or virus because they are about to become ill. There are choices you make sometimes that work out well and not other times. Like when Christopher and Trish took Rachael to church with them when she was a month old and she developed RSV. You just make choices that are wise for Sophie. I am certain that sometimes you feel like you are in prison though.
I haven't forgotten Sophie's birthday. I didn't have an opportunity to get her gifts in the mail yet. I am having a hard time getting things done at the house between work and traveling. I had thought that I would have time before I left for PA on Wednesday, but I didn't get home from work until after 2pm, so that ended that thought. It is on my agenda for tomorrow. Actually, Sophie's isn't the only gift that I need to get in the mail tomorrow. I have a friend in NY whose birthday was the 1st and her daughter's the 8th that are on the dinning room table to be wrapped and sent. I would ask for more hours in my day, but then I would have to work more hours, so that doesn't help!
Take care. Let me know if there is anything I can do to help you or your Mom. Hugs and kisses all around. Love, Eileen

Happy Birthday to Sophie! It sounds like she had a nice one with the family.

I hope you can keep up with her appetite! That's a lot of yogurt! I'm also happy to hear that the potty training is going well, that must make things easier for you (most of the time).

Elisabeth has had an eventful week! Rob took Camille to see Swan Lake a couple of months ago and she loved it.