Zoralei had no schedule at the hospital today. She had to do two at home exercise programs, one specifically had to be done outside of the hospital. Every time she does one of these, a nurse or parent have to sign off to say we are a witness for her to accomplishing the task. Even though there is no schedule at the hospital, Zoralei still only gets 6 hours. This was difficult because it meant that she had a lot of waking hours alone at the hospital.
Zoralei wanted to go to church, which goes from 9 to noon. We picked her up at 8:20 am for that and needed to have her back by 2:20, but I did not like the idea of her having the entire afternoon and evening alone. I just know going back to the hospital yesterday after a leave was very difficult for her and made her very moody. I expected an afternoon of just thinking about how she wanted to be home again would make it a very long day. So we decided to bring her back between 12:30 and 1 pm and I would drive back out there in the evening and just take her to a local park. Then she can escape for an hour and a half. We did not bother to come home the 2nd time because that is a half hour drive and in a 15 passenger van, the gas is outrageous.
Zoralei went to the first two hours of church and for the last hour, she came home and did the exercises so we could sign them off before taking her back to the hospital. When we bring her back to the hospital, we have to wait to leave in order to report to the nurse about how our visit went. So far, I keep seeing Zoralei exhibiting pain behaviors. She still favors the arm a bit, lets others carry things so she does not have to use her arm, and gets really upset if anyone seems as if they might brush against her arm. I asked her if the pain was any better, she said, "Yes, a little though it still hurt quite a bit." She said that every new desensitization exercise is like starting over. For instance, she is used to vibration now so she can tolerate it, but if you were to do a new exercise involving a different texture, it feels very much like the first time she did vibration. It seems each new experience has to be overcome, rather than just getting to the point that her arm is simply doing better overall and not over-responding to things.
The second visit at the park today was the first real progress I saw that the pain behaviors are improving. I brought her friend with me and she waited in the family lounge while I checked Zoralei out. Then we went to the local park, which is within a half mile of the hospital. We had a picnic lunch, played a card game, took a ton of selfie pictures, and then played on the play equipment. The most amazing part of this was watching Zoralei on the play equipment. She balanced without fear of falling off and hurting her arm. She spun the merry go round without claiming it was too much for her arm. I saw a noticeable difference in her desire to do things, to not shy away from the pain. She was laughing. Even after spinning the merry go round numerous times, not once did she say that she could not do it anymore. A couple of weeks ago, this would not have been the case. I felt like I was seeing my daughter pre-pain disposition. It was such a great time. I thoroughly enjoyed the experience because my daughter was genuinely enjoying herself.
I think she had a greater appreciation for not going back to the 4 walls either. Something about being outside was rejuvenation and since several of the friends she made at the hospital were released on Friday, I know it was very hard for her to look forward to this week. Tomorrow's schedule was very heavy, lots of exercise and extra therapies in between so I know that weighed a bit on her. But she just enjoyed herself and not once tried to cause an argument with me. This was just an hour and a half of our weekend experience and during other parts of our time together, we saw pain behaviors, but it was encouraging to see that the program was indeed helping her to cope better, to live fully, even if the pain was not significantly lessened.
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