First of all, Hannah’s mattress was oh, so comfortable after a week of sleeping on benches too short, narrow, and or hard for the average adult human. Hallelujah! Annie did wake up at 12:30 am and 5, insisting on being taken to the bathroom. I had supplemented her measly meals with Nourish through her g-tube before bed, and I think I am going to cut her off from all liquids after dinner from here on out. So our day started at 5, but I was able to fall back asleep in the middle of the night, and I made her stay in bed quietly until 6, so we rested even if we weren’t sleeping.
The staff is really emphatic that they can take care of her while I get outside (probably noticing the dark circles under my eyes and my general air of overwhelmed stress) –so I went for a power walk along the lake during her first PT session and then went out and got fresh air and grabbed lunch during OT. Sunlight definitely helps my spirits.
Annie’s totally back to her own extroverted self. We just have her on tylenol three times a day, and she hasn’t complained about pain once all day. Her bubbly personality and the cute little bob haircut obviously have all the staff in love with her–the nurses and techs and interns stop by all the time to talk to her and see if we need anything. She even got an extra hour of PT today–when she’d finished her first session and was enjoying the special therapy bike, another PT was free for an hour and offered to take her around some more! Just time for a brief break, then group OT (painting activities) with another little girl who seemed to have as much personality as Annie. Then she hung out at the nurses’ station with the staff until lunch, ate lunch, and asked to go back out to chat with them (and type on their computers) until her last PT session of the day, when she got to use a standing wheelchair to get around!
We finally met with the social worker, who finally is going to send over a referral to Ronald McDonald House, where I may be able to stay overnight sometimes once Annie no longer needs me in the night. One other possibility is that our insurance may decide that hospitalization is no longer necessary for Annie, while the in-depth PT is, so we could get cut off from staying here at Shirley Ryan before we’re ready to be done. If that happens, we may both move over to Ronald McDonald to sleep and come over here for the same intensive therapies. On the one hand, it would be great–the food here is truly abysmal, and trying to get Annie to eat it is a huge struggle. But today she spent so much time hanging with the staff that I truly got a lot of lesson planning done for the high schoolers, and going back to entertaining her every moment when not in therapy sounds hard after my breaks today! We’ll be having team meetings with all the doctors and therapists every Monday at 11:30 AM where we will discus her progress and probable timeline.
Then in the late afternoon, the doctor gave us permission to spring Annie temporarily from the unit and go for a walk down along the river with Hannah! It was Annie’s first time outside in over a week, and she didn’t like all the loud traffic sounds but did enjoy getting some sunshine and seeing a couple of dogs being walked.