I started this on Monday, yesterday, and thought I'd finish it last night, but once again I fell asleep with Julia and never made it to the computer again. So, now it is Tuesday, even though this post will say that it was published yesterday.
Julia asked to sleep in her own bed last night. Wonderful! I have been worried, just a little bit about her wanting to stay in our bed once David comes home, and she has seemed to need it since he went into the hospital. But last night, I headed for my room to put her to bed and she asked to go in hers. In some ways, Julia knows herself and follows her needs. I am always happy to see that she can take care of herself.
David walked up and down 6 stairs Monday morning in the stairwell of the hospital. Ah, the things that go on in stairwells. I've always loved singing in stairwells. I think I broke up with a early college boyfriend in a stairwell. I remember the stairwells at the boys high schools we visited having that sweet, smoky smell, and then of course, they were a good place to have a few minutes alone. And now, David is walking up and down those same echo-y, cement hard, cold, neutrally colored steps. He will be practicing for the rest of the week because we have so many steps at home. Our house, cute as it is, is no place for someone without the means to get up and down stairs. If one of us loses use of our legs, we will have to move.
The hospital doesn't have rehab facilities (and David is not quite ready for a gym) but his PT invited him to her office where she has a few machines for him to work with. I am sure she will watch him like a hawk -- his reputation precedes him -- but he would like to be on the stairmaster as soon as he is able. His ambition right now is to get to the reading of his play, Kiritis, on Saturday. We will ask the docs what they think and then use common sense -- I hope we get the chance to use common sense.
According to David, the heart is doing fine but the rest of his body is freaking out. David says that it feels like a brass band is pounding in his chest. His skin is not as dry, his hands and feet are no longer cold -- a pumping heart is impressive. How many times have I said this? And again, he is still experiencing pain at his incision site and his gastro-intestinal system is out of whack. None of this is exceptional. David does have med induced diabetes, and is on two forms of injected insulin. Lots of teaching time is devoted to getting David use to his many meds to take during the day and also to inject himself with insulin. David had a plethora of meds before the transplant, he took them day and night and I don't think there was a similar effort pre-surgery. There has been multiple people coming in to teach David about his meds, his needles, and his testing devices. There are also changes to his meds ALL the time. They usually note that David is an easy student to teach, and I wonder how those who have a greater challenge learning to live with transplant. Is this a question when qualifying someone for the transplant list?
He is beginning to communicate with people again, that is, talking on the phone and emailing. He will be back to reading soon -- hard to see an untouched New Yorker in David's room. We have finally understood the reason for all the stupid tv shows! They are totally undemanding for the medicated, post-surgery body and mind! What comfort! I would think they could merely devote one or two channels to this sort of programming, but it seems that a medicated, post-surgery mentality may represent some sort of ground zero of the tv-viewing world.
Julia had early release on Monday from school, and I brought her to the hospital after school. She drew -- what else -- working with a small dinosaur stencil book. I think someone gave us this book before Julia came home. She has been unwilling to use stencils -- or maybe, she did not understand how to use them. When I was cleaning out my mother's house, I found some old geometry "rulers" with shapes cut out to trace. There was also two stencils for chemical formulations. Julia started playing this those this weekend, and I thought it was time to bring out the dinosaur stencils. And I was right. I am hoping to get some food into her this afternoon, before we return to OT and speech today before her at-home therapy.
At speech, Kara tried to get Julia to make up questions about a situation. At one point Julia said that she did not understand what Kara wanted her to do. I think that many times when Julia gets loud and uncooperative, it is a lack of understanding. Sometimes she gets new activities very quickly, but not always. The not always times are hard and she still is scared to take a chance on activities that she doesn't understand. Tell her that I/we know she will be able to do it, just doesn' work. It is her inner core of self-protection that kicks in. The behavior comes off as stubborn and uncooperative, it can be hard to see it from her standpoint.
Echo-cardiogram and biopsy today As the day goes on, they have changed their optimist going day from Thursday to Wednesday, but I think Thursday or Friday is more possible. Each time the staff talks about going home, my stress level goes down a little bit. And when that happens, I get tired. LOL! What a response to good news!
Food keeps on appearing at our door on appointed days. There is always more than we need for one day's supper. And so we have a meal and leftovers. And I am grateful for all of it. I can spend the little time I have with Julia really with her and not shopping and cooking. I have also not been in any mood to think abot cooking. If I could eat the same thing every day, I would be fine. I don't know if the same is true for Julia.
The day is stunning outsdie. Sunny and getting warm. Just perfect spring weather! We have no therapists today, so when Julia gets out of school, I want to take her to our little zoo. She can run around, watch the river otters and giraffes, and maybe I can snap a few pictures of my girl
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