8/26/05
8:30 PM: Today has been a very challenging day. It started last night when Sophie woke up hungry just as Susan and I were falling asleep. I got up to tend to Sophie and for the next two hours Sophie and Elisabeth needed something or other. Sophie ate twice before 2:00AM, Elisabeth woke up with a nightmare twice and once with foot cramps (growing pains). So, I got just over 4 hours of sleep last night.
Sophie seems to be especially uncomfortable today (or maybe it's just because today is the first day that I've had her all to myself and I am pretty sleep deprived). Sophie's eating and napping routine seems to be becoming more manic, if that makes any sense. She lays down to nap but gets up five minutes later, or needs me to read a book, or lay down with her, or she decides that she really wants to eat instead. The same thing holds true for her appetite. She wants something to eat, but nibbles at it and pretty quickly asks for something else.
I have spent the better portion of the day chasing after her, making her a snack, putting the half-eaten snack away, getting out another snack, carrying her back to bed, cleaning up the snack, getting her back at the table, making yet another snack. Can you tell I'm frazzled? As soon as the girls get in bed, I may have to go to bed myself. That may be the only way I have enough energy to make it through the next week (although Sophie has three--count them, THREE--more days of steroids, it will take several days for the effects to wear off).
Elisabeth is on cloud nine with school. Everything is great. The teacher is great, the class is great, her friends are great, her principal is great. And, I will point out, there was no pig truck this morning!!! Now that is something to celebrate and be happy about.
We're all hanging in there (I may be in the worst of shape today, so don't think we're all reeling quite as much as I am). But sometimes, hanging in there is all you can do.
I made the startling realization today that although the six pounds that Sophie has gained doesn't really sound like a whole lot--I gain at least six pounds on Thanksgiving--it is a significant percentage of her total body weight, like somewhere between 20-25% of her weight before steroids. Imagine if your weight increased 20-25% over the course of two weeks. Now I think I can appreciate why she is just so physically uncomfortable.