On Friday, the day I met with Kate’s doctor, I was once again unable to get her up before the sitter arrived. She was in a good mood. She even said she would like to go to lunch with me, but she would never get up. She said something like, “Just give me a few minutes,” but she still wouldn’t get up. She stayed in bed until I got home at 5:00. Except for a short bathroom break that morning, she had been in bed nineteen hours. She was up less than two hours for us to go out to dinner and return home. She was back in bed at 7:30 and went to sleep rather quickly which is unusual.
She continued to sleep Saturday morning until 11:00 when I tried to get her up. She was resistant, but I coaxed her. I told her I was concerned about her staying in bed so much and that she needed to keep her muscles exercised or she could find herself in a wheelchair. That did the trick. Once she was up, she seemed fine. She was in a good mood, and we had a nice lunch.
When we returned home, she rested over two hours. Then I suggested that we look at one of her photo books. We spent about thirty minutes on that before going to dinner. As she had done the previous night, she got ready for bed right after dinner. I was glad to see that she woke up on her own around 9:00 this morning. She wasn’t sure where she was but wanted to “get out of here.” I told her I would take her. We passed a little over an hour at Panera before leaving for lunch. She has been resting almost two hours since returning home.
She is definitely spending more time resting with breaks for lunch and dinner most days. So far, we have had only two days when I wasn’t able to take her to lunch. There has also been an impact on her use of the iPad. I’ve been keeping a record of her daily average time on the iPad using her screen time for the correct information. For the week ending January 5, she averaged 49 minutes a day. That dropped to 39 the next week. The figures for the succeeding weeks are 25, 26 18, and only 8 minutes a day this past week. That’s a dramatic shift from my estimate of 6-8 hours a day as late as last summer.
We are in a transition phase now, and I will take it a day at a time as I attempt to establish a new routine if that is possible.