amaya at lake

amaya at lake

Tuesday, July 10, 2012

Time with a friend

     Today Amaya was able to spend some time with her good friend Mason and his family. When we got there they were happy to see her out of her wheelchair walking. We got to go swimming at his grandmother's house, the kids played dolls, played on a pile of dirt, laughed and reminisced about "when they were young,"(which is funny since they're only six), shared a snack, and got to hang out. Amaya had a good time swimming and did a good job. But, she wished she would have jumped off the diving board (I'm a bit glad she didn't). She said it was still a bit old to do some real swimming (underwater swimming). As soon as we left Amaya told me how much she loved seeing them and how much fun she had. She asked if we could go back tomorrow. It's so important to be able to spend time with good friends; who accept you just as you are, help you, and who don't treat you any different because you're wearing a fixator (except for walking slower so you can keep up).  It was so nice to sit and watch the girls play and not worry about them; I got to sit and have an adult conversation with his mom and grandmother (who I'm lucky to have as friends). I was so relaxed I totally forgot to take a picture of the kids.
    After our time with Mason we headed over to therapy. I updated Melissa on our appointment with Dr. Nelson. She was also pleased with the new x-ray. I told her that Dr. Nelson said Amaya was ready to drop down to there days a week. When I told her that Dr. Nelson said that Amaya wold probably be setting some records she said that she's certainly already set some there at therapy. It was so nice to hear that and I was instantly giddy. As I was updating her I let her know about the crunching sound in the knee that we sometimes hear. I let her know that Dr. Nelson said that it was "normal." As I said it I realized that Amaya's normal is different than everyone else's. It's not normal for my knee to crunch or grind when I bend it, but for Amaya it is. Her normal is different and that's okay. I think today is the first time I really understood that. A little a-ha moment as they call them. Melissa told us that she started working with a teenager who is also doing a femoral lengthening but his fixator is an internal one that you turn with a magnet. She said it's pretty fascinating to see. I had seen it on Dr. Paleys' website but since its such new technology I was so excited to hear that Dr. Nelson is using it as well. It's called PRECICE.
    After she massaged and stretched Amaya's knee Amaya was so excited to work. She kept throwing out suggestions of things she wanted to do. It was nice to see her so motivated, and energetic. Especially after swimming and after all the therapy she's done. When she started bends her knee was at fifty but got up to 64 quickly. Then as she kept working her legs got tired. After a few minutes Melissa told her that she was at 99, and asked her if she wanted to stop there or do one more push to get to 100. Amaya said she'd go for 100. So she did one last hard push and sure enough she got to 102! Melissa said she likes when Amaya does one big push because she usually gains a few degrees.
   Tonight as we showered and put new gauze on I noticed that two pins on the bottom are red and inflamed, not just the one that we showed Dr. Nelson yesterday. I'm glad they started her on an antibiotic. Hopefully it'll work soon, because those pins are bothering her a lot. They were very sensitive in the shower; even putting a small amount of water on them hurt her.
Amaya started with the bike today. first she bowled then rode down and up the hall way. Then she asked to do the bi-scooter, so she rode that down the hall and back once then walked into the other gym to work on stairs. 
Here she is working on the stairs.
After the stairs she rode the bike back into the peds gym where she climbed up the ladder to reach for some bean bag animals. Today she climbed more than she has since she's had the fixator on. She did great; she was steady and had good balance.
Then she posed for a picture.  Then Melissa had her sit five times with her knee bent so that she would get a good stretch.
I got a picture as Melissa measured her knee at 64. 
After bending for a few minutes she gets tired; her legs are tired, she starts to put her head down, and starts to cry, moan or whine. Melissa reminded her to keep her head up so that gravity would help her bend more. She started resting her head on my knee as she did, so I snapped a picture of her sweet head resting on my leg as she did her last pushes.
I noticed that our toilet is getting pretty beat up from the fixator. At first only a little of the paint was peeling off , but its pretty much all gone now. 

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