When she woke up Thursday we decided to let her stay home from school because her top pins were still hurting from where she had gotten hit at school the day before. That in addition to her lack of sleep all week, we figured she needed some extra rest. She said that her pain was at a two or three when she stood, but at a five when she sat down and put pressure on it. That was another reason to keep her home from school (we didn't want her to be uncomfortable at school and five is a high pain number for her). She spent the day relaxing; watching movies and playing with Lidie. I noticed several times that she was standing instead of sitting (to eat and to watch TV) and when I asked her about it she said that it hurt to much to sit. She refused pain medication all day, but by night time she said she felt better.
At bedtime it took fifteen painful minutes to lock her bar in. Toward the end she was very tired, and sore and in pain and had a mini-meltdown. She started crying and saying that she wished she could have her fixator off, asked why she had to have it on in the first place, and said she didn't like it. could tell she was tired, so I tried to comfort her and get her to sleep as soon as possible. She cried and said that at P.E. she couldn't do something that the other kids did and she felt bad. I asked her how many kids were wearing fixators at P.E. She said only her. then I asked her if it was fair to compare what she can do with a fixator on with what others can do without a fixator. She said no. So I told her that wasn't fair. And that what she does with a fixator is very impressive and she has a lot to be proud of. I listed all other qualities and accomplishments and told her how proud of her I was. I don't think she realizes how amazing she is.
She fell asleep about thirty minutes later as I massaged her foot. She woke up at ten thirty but fell asleep quickly. She woke up again at three thirty and was up for almost an hour. Lidie also woke up at three and at six so my sleep was not great that night.
Friday morning Amaya had therapy before school. Melissa put new tape on her knee to get her through the weekend. Her tape isn't lasting very much now because when she's in pain at night she moves her body so much to try to get comfortable that her right foot pushes on her knee and peels the tape off. Amaya asked if they could measure her knee before starting her workout. It was at forty-three degrees, which is pretty good. Lidie had a meltdown at therapy today. Its always hard disciplining a child in public, but somehow it seems worse at therapy. It's never easy, but thankfully Amaya can be pretty independent and work with Melissa on her own. Her knee was at fifty-four degrees before she started her bends. That means she gained eleven degrees as she worked. Not bad for forty-five minutes. She worked hard and wanted to get to ninety within a minute again, but it took a minute and eleven seconds. That's still an excellent time! And she was able to get up to ninety-two degrees, her highest number this week.
That night it took twenty minutes to lock her bar in. Her leg muscles are still tight and are trying to catch up to her bone growth. A friend asked about it and I explained that even though Amaya grew 3.1 inches of new bone in three months it will take over a year for her muscles to catch up to that. I massaged her leg until nine thirty. She fell asleep but was still uncomfortable, crying, moaning, and couldn't rest. Then she was up from eleven thirty until midnight. From then on the night was rough. I would get up, massage her foot or knee for about an hour then I would wake up because I had fallen asleep in her bed and I was very uncomfortable. This cycle repeated about three times until Lidie woke up at six am. I was so incredibly exhausted. After a rough week of poor sleep this put me into delirium. Yesterday I napped for two hours and was in bed by ten so I actually feel rested today. I had Amaya sleep in our bed last night in case she had a rough night again. Which thankfully she didn't.
Thanks again for all of your love, care, concern, and friendship. After a tough week (on so many levels) its nice having a strong support system.
Amaya started the day by working on the train. She rode it down the hall and up the hill and back. She did great.
Amaya did some bends and lunges while throwing balls. Then climbed up and down the ladder.
Lidie jumped on the trampoline while Amaya raced Melissa across the room. Amaya pulled herself by bending her knee. Melissa noticed that Amaya was turning her foot inward. I told her that she's been doing that at night while she stretches her leg to lock her bar in.
Melissa pushing Amaya around the room for fun and to strengthen her muscles.
Celebrating the last day of summer with some ice cream with Tia Amanda. After ice cream we went to the park with Amanda. I can't believe we've gone through another season with a fixator. We started in spring, all of summer and now are in fall. Wow.
Amaya tried climbing up this climbing wall. She always looks for a challenge.
I love this shot. Just playing in the evening.
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