The past two nights Amaya has had a lot of pain once we lock her bar in. He knee hurts, her top pins hurt and so does her foot. Her top pins look good, but have been having more drainage and some blood. We know that's all normal, so its okay. She keeps getting up to stand on her leg which gives her some pain relief (about three times a night). It takes about thirty minutes to an hour for her to fall asleep but once she falls asleep she's been staying asleep the entire night. Those thirty minutes to an hour are pretty painful and difficult. I massage her knee and foot to help alleviate her pain. That and a hot pad seem to help, but she does get moments of desperation where she begs me to take the bar out. But, she's so sweet and knows better. She said, "mom the one thing you can do to help, is the one thing you can't." It's true and sad. I want to not only help alleviate her pain, but remove it, but I can't. Removing the bar would cause more harm than good.
In case you're wondering we still don't have her removal surgery scheduled. I've made a couple of calls to follow up, but still haven't had anything scheduled.
Today's therapy was early. Eight a.m. to be exact, we were the first appointment Jay had today. We had a full hour with him, which gives Amaya enough time to work, and to do her bends. Amaya told Jay about the foot and knee pain she's been having. She has them a lot at bedtime. The foot pain is knee; its about halfway up her foot, on the sides. Jay said the foot pain is probably because of her nerves. There are so many things in her leg that seem to bother her; nerves, muscles, tendons, bones, skin just to name a few. Jay showed me how to mover her knee cap to give her some relief (up, down and side to side).
Jay had Amaya start with bends on a skateboard, then had her do knee bends, step up on steps, and stretch her knee then she went in the adult gym to do squats. While she was on the machine Jay put new tape on her knee and gave me some extra in case I need to reapply it over the weekend. As she was doing her squats I noticed another patient looking over at us. We've talked to him before, although I can't remember his name. He watched Amaya do her squats then smiled and said, "she's taking it better than I did." He had worn a fixator a while ago. I smiled back and said that yes she's adjusted really well to it and works really hard. After that Amaya pulled herself across the gym on a stool.
Then we headed back into the kids gym to do her beds. Her knee was tight and started in the low forties. It took eight painful, looong, frustrating minutes for her to get up to ninety-two degrees. Her knee was tight form missing two days of therapy, and from it being so early in the day. Once she got to seventy degrees her knee was tight and painful as were her top pins. Ugh. Some days I wonder how we'll ever get to ninety degrees, but I know we have to. Its not a choice. Once she was done she recovered pretty quickly, but said her pain was still at a five.
When we were getting Amaya ready for bed the other night she showed me something she discovered. The bar she locks in every night is about 3.1 inches long. She showed me that the bar was as long as the space on her bar that she lengthened. Dr. Nelson put that back mark soon after her fixator was first put on. The top part (with the two silver circles and the three pins moved up that far (3.1 inches) in three months! It still amazes me.
I also realized that a 5K is 3.1 miles, which we'll be walking in less than two weeks! Amaya is so excited and touched that she's raised over a hundred dollars to help another children's hospital. She's raising money for the Children's hospital of Orange County.
Here's Lidie working on some art for our pen pals.
This morning at therapy Jay had Amaya slide her leg back and forth on a skateboard.
Here's a side view of Amaya sliding her legs back and forth. She used a skateboard, a towel and a special mat. She was able to get a good bend when she did both legs at the same time. Jay recommended that we do this at home with a towel on the wood floors. We'll add it to our physical therapy homework list.
I took this of Amaya when she was doing her bends on the total gym machine. She was in pain when I took this picture, but it looks like she's smiling. She was complaining that her top pins (see her hand on her pins) and her knee were hurting. But, she pressed on and kept going.
While Amaya was working Lidie was working on her "skills." She balanced a cup on her head, balanced on a beam, and swung into the ball pit. She's turning into a one girl circus act, sort of.
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