The past few days have been a bit rough. Thursday night Amaya was feeling pain all over her leg. It made getting comfortable difficult and falling asleep a challenge. She said, "My skin feels like taffy that’s being stretched." I could easily picture that painful visual. She said her skin felt thin and uncomfortable. She said even me touching it bothered her. It seems that the majority of her pain the past few days is a result of the stretching and growing of her soft tissues. This is what makes lengthening painful, not the actual pulling the bone apart. It's the stretching and growing of skin, nerves, muscles, etc. She was up at about two a.m. and called me in pain. I gave her some pain meds, massaged her hip and knee and put an ice pack under her knee. Thankfully, I got her back to sleep within 30 minutes.
Despite the pain she was in Friday morning she decided to go to school. She had a couple of classes and a test she didn't want to miss. She was there the majority of the day but had to go home early because of pain. Friday evening and night she was in a lot of pain as well. The pain got the best of Amaya and she was hard to console. She was overwhelmed with emotions. She was feeling frustration at not being able to get a break from the pain or being able to get comfortable. She felt some desperation that nothing she did felt like it helped. She was also tired and worn out. At one point she said, "this is sixteen years of tired." It was heartbreaking to hear and witness. Like her I felt frustrated that I couldn't remove her pain. Josh and I tag-teamed; one of us massaging her foot and the other her hip or head. She had a hard time falling asleep and was up very early in pain. I went in her room about 5:30 am feeling exhausted but grateful to be able to help. It took a bit to get her calm and her pain managed then she fell back to sleep. I was so tired but couldn't fall back to sleep.
Saturday morning we got a surprise visit from friends who swung by for a quick hello and to deliver what they called "just bagels." I assure you, they were not "just bagels." It was thoughtfulness and kindness in action. It was the ray of light I needed after two very long and exhausting nights. The fresh bagels and cream cheese were a nice treat and a reminder that we have love and support from so many. We are so fortunate!
Saturday night and Sunday were more of the same. Difficulty falling asleep, interrupted sleep, pain and discomfort. The nights are much worse than the days. We think it's because during the daytime she's got things to distract her, whether school, Cocoa, us, and she's able to move as needed to help. By nightfall she's exhausted from the day's lengthening (growing .99 mm a day), physical therapy and pain. As she lays for long periods of time that bothers her hip and knee. She's tired and doesn't have the same energy to combat negative emotions or to "power through."
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