amaya at lake

amaya at lake

Wednesday, May 9, 2012

Tin man

     Last night was way better than the night before. Amaya was able to fall asleep quickly and easily and stayed asleep for several hours before waking up for pain meds. I'm so glad she got good rest and a break from the pain. She even woke up rested and in a good mood. Tonight she also fell asleep quickly (at seven thirty) and has been sleeping pretty well since then.
     We had an appointment with the chiropractor before physical therapy today. We had a few extra minutes in between so when we arrived at physical therapy we played in the outdoor playground there. The last couple of times that we've gone, Amaya wheels around in her wheelchair, parks in the shade to play and goes down ramps. Today after she wheeled down the ramp a couple of times she decided to park her chair and get out to play. She was so excited to play, have fun and "be a kid." It was neat to see her motivated to do things and not letting her fixator or pain hold her back. She walked up and down steps, climbed and had lots of fun.
     Amaya has been calling her fixator "Tin man" because when she bends her knee it squeaks like the Tin man from The Wizard of Oz. She jokes that it needs oil like he did. Today she decided to add a first name to it, Grease Lightning (like the song from Grease, her newest favorite musical). So now it's Grease Lightning Tin man. It's funny how she comes up with stuff, but it's nice to see her becoming more accepting of her fixator. It's definitely been a process of acceptance and self-awareness. But she's done great with it. I was so afraid those first few days and weeks after she first got it on. She refused to look at or touch it, but now she touches, grabs, lifts, helps remove her gauze, and has named it. I wonder what it will be like for her when it comes off. I have a feeling she'll miss it. She asked me today what will happen to it when it comes off. "Does another kid use it or do I get to keep it?" I told her that I don't think they would reuse it, so maybe she can keep it. We'll have to ask Dr.Nelson at our next appointment. 
     Lately she's noticed that her left leg is no longer shorter than the right one, in fact she can tell that it's starting to get longer than the right one (isn't that unbelievable, crazy and amazing?!). When we're done lengthening (in about three weeks!) it'll be one inch longer than the right leg. It was almost two inches shorter when we started. That way when she's done growing her right leg will catch up and she'll be even. If for some reason her right leg is longer, Dr.Nelson will do another surgery to stunt the growth of the right leg. 
At the playground Amaya climbed on the "bongo drums." 

Lidie decided to climb over every bar on her way to the bongo drums. 

I spotted Amaya for the first few times that she transferred from one bongo to the next. She did really well at keeping her balance and using her muscles to transfer her body weight from one to the next. This one is the highest one there; she was able to transfer from it to the others with no problem. She kept going for several minutes on these.

Kim had Amaya roll her leg on the blue roll. She had to keep her knee bent as she did it.

Here's some video of Amaya practicing walking down the stairs. She still needs to work on her "crazy ankles and crazy hips." But, since we have stairs at home she gets quite a bit of practice. Going down seems to be more of a challenge than going up.

Here's some video of Amaya walking back from one of the adult gyms into the hall. She walked there and back; she's getting a lot better at walking long distances on her own.

Amaya was on her hands and knees rocking back and forth to help stretch her knee. 

     When we checked into the physical therapy office the lady at the counter looked up, smiled and said, "for Amaya?" I smiled and said "yes." When you go everyday for several months, people start to get to know you. We recognize lots of staff and patients now and exchange smiles, nods, waves and hello's. After Amaya did all her work (walking, stairs, stretches, etc.) then she started to do her knee bends. Her knee was really tight today and it hurt her a lot. The first bend she was only in the seventy degree range, but even that hurt her. Next she got into the eighties, but it was so hard for her to get that much. At that point she started to clam up and shut down. We still had to push forth and get to at least ninety. Kim gave her a small break so that she could massage her knee. But Amaya refused to look up, or give us a goal that she was aiming toward. When her heart and mind aren't in it, it's ten times harder. She's never really shut down like this at therapy, and it was hard to see her that way. I can't say that I blame her, its hard to hold it together everyday. We continued on with her bends. On the last one we got her to ninety-one. I was glad and relieved, I didn't want her to have to do one more bend. She was crying out in pain. Lidie tried to comfort her but Amaya didn't want anything to do with her. She didn't want anything, she didn't even jump in the ball pit. I gave her some space and about halfway home she was back to her normal self. I'm amazed by her ability to bounce back from such a low point so quickly.
      I kept thinking of her pain all day and couldn't help but letting it bother me. It's almost torture; to sit and watch her in agony and pain on a daily and nightly basis. It's definitely the hardest part of this journey. Later I found the following quote from an email from Oprah.com "If we believe that tomorrow will be better, we can bear a hardship today." by Thich Nhat Hanh (a Buddhist monk). It was just the encouragement I needed. I know that tomorrow will be better. Unfortunately, our tomorrow is really several weeks, if not months away. But at least I know an end is in sight. Just about twenty one days left of lengthening (we'll know for sure after our next appointment with Dr.Nelson, in two weeks).

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