Today was extremely difficult for Amaya (and us). Last night she did her physical therapy homework just after we did her lengthening. Her pain was managed and she was fine. Until, it was time for bed then she couldn't sleep and her pain began. She was in so much pain and discomfort she had a hard time falling asleep, and staying a sleep. She woke us up at six thirty in tears. I headed down and was saddened to see just how miserable she was. She rated her pain an "eight" and for Amaya that is extreme. That's the highest pain she's had since she first had her surgery. I gave her pain meds and massages to help alleviate the pain. It was jarring to see her so sad and in so much pain.
In addition to the pain she was frustrated and disappointed. That she wasn't doing as well as she'd hoped, that she was going to miss another day of school, that she wanted to push herself harder but couldn't because of the pain. It took quite a bit to get her calm and her pain managed. Unfortunately by then it was time for her first lengthening session and her morning exercises. Ugh, I wanted baldy to let her skip, but I know that long term that isn't best for her. She said she couldn't do them all so we did the ones they told us were the "can't skip" ones. Through tears she powered through and did them. Just writing that is heartbreaking.
Amaya stayed home, napped and felt pretty miserable the rest of the morning. Thankfully Josh was able to run home during his lunch to bring her some food, check in on her, give her pain meds and the TLC she needed. We put a heat pad on her knee and that seemed to help alleviate the pain.
When we went to physical therapy the therapist was disappointed to hear that she was so miserable. He said that perhaps she pushed it too hard last night; she agreed and said she wanted to do a lot and get her knee well quickly. He reminded her that its a balancing act, pushing hard enough to get a stretch but not too much that she is in pain. He also reminded us that since her angle was corrected then the muscles on the outside of her knee are a bit higher than the ones on the inside. So it makes sense that that's where she is experiencing most of her pain. That's also where she has had multiple incisions, scars and her recent scar release so it may be extra sore there.
The therapist we worked with today said that she would change today's treatment plan a bit. She had originally planned to get Amayas knee to 65 degrees because she knows how important it is to regain that range of motion. But she said that if she was in too much pain to sleep or go to school then it was too much. She focused on some ankle and hip work to help strengthen those areas. Without use the hip and ankle will weaken and it's important to use them to both alleviate pain and to make sure they will be strong once Amaya starts to walk again. She also taught Amaya a couple knee beds that she could do standing, laying down and on her tummy. This should still work on bending the knee but in a less strenuous and painful way. She also massaged Amaya's knee and the side of her thigh to reduce the swelling, release the fluid that's trapped there and to help relieve the pain. Amaya said it felt good and helped. She showed me how to do it so that we could do it at home as well.
Toward the end of the session she did a knee measurement, and on the first one she was surprised by how well Amaya did. She asked Amaya "what would you like it to be?" Amaya said, "sixty." We were all shocked when the number was 73! That was without major effort, pushing or pain. She let Amaya's knee hang for another minute to let gravity help pull it down. That extra minute got us an additional 3 degrees! Amaya's knee was able to bend to 76 degrees today! Wow! I was happy, relieved and proud. Even though we started the day on a low I'm glad we ended it on a high.
We were given new exercises to do for homework (twice a day) and were instructed to go home and ice Amaya's knee for twenty minutes. She told us to avoid heat and stick to ice when she's in pain; to help alleviate the swelling. Amaya isn't allowed to take ibuprofen during lengthening so this is the only way we can alleviate it. We go back for another session tomorrow. This evening we will do another lengthening, her pt homework and hope she can sleep through the night. Wish us luck.
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