amaya at lake

amaya at lake

Monday, September 10, 2012

Lidie's fixator

      On the drive down today Lidie started talking about when Amaya's fixator comes off. She started to say that the day Amaya's fixator comes off is the day she gets hers put on. Ever since Amaya had hers put on Lidie has wanted one. I'm not sure why, but probably just because her sister has one. Amaya has tried talking her out of it and letting her know that its a bit painful and she doesn't want her to go through it. Lidie still likes to pretend she's getting one. As long as its a pretend one I can handle another fixator. She said she's going to wear hers on her right leg. She said that Dr. Nelson will put it on for her at "children's hospital." She said she has to get it because her leg is so itchy and that's the only thing that will fix it. When I asked her how long she has to wear it for she said, "pfft, umm, like, ten weeks." Ten weeks seems like a lot for an itchy leg, but since its pretend, ten weeks is fine by me.
     We picked up Amaya from school then headed to therapy. Amaya said she had a great day and didn't trip once. She said she did have a girl be mean to her at lunch but she's going to talk to her teacher about it tomorrow. When we got to therapy I noticed that one of the receptionists had cut her hair. We talked for a bit and she made sure to say hello to Amaya and ask how she was doing. I appreciate how kind and welcoming people are there. I always feel like I'm going to a friends home or a home away from home. As we sat in the lobby a mom that I met at the last PossAbilities mom's night was leaving with her son who had just finished his session. She stopped and talked with us. She was so kind and friendly. She introduced herself to both girls and asked to see Amaya's fixator. She knows Dr. Nelson and his family from church and she told Amaya that he's a great human being. We agree. It was so nice to run into a friend at therapy. I get so much encouragement from other moms who have children with special needs. Their strength, courage, resilience, patience and kindness are a great example for me. When we got back into the adult gym several of the other therapists smiled, said hello and asked how the girls were doing. I appreciate the kindness the staff shows toward us.
Amaya started off by working with this machine today. She pulled thirty pounds. She started by walking backwards a few times then forward facing a few times. Forward facing is the hardest because ti requires her knee to bend more, but she did great with both. Lidie was a great motivator by standing at the end to give Amaya a high five.
     Then Amaya walked over the cones a few times. Melissa had to help her bend her knee and lift up her foot over each cone. Lidie always wants to walk behind Amaya but she walks so fast that she catches up with Amaya and tries to get her to go faster, but she just isn't able to, yet.  Instead of walking straight into the children's gym Melissa had Amaya walk all around the adult gym first to practice her fast walking. She did great! She walked so fast that me and Lidie didn't catch up (and we were in the wheelchair). Melissa said Amaya did a good job, but still had her left foot turned inward. We still need to work on that.
      Amaya did bends and threw bean bag animals into the basketball hoop. Melissa let us know that she did that earlier with Penelope our friend who is doing a lower limb lengthening. As Amaya did her bends she told Melissa that she decided to do the triathlon in the spring. Melissa was excited to hear that. As she did that Lidie played catch with Sarah, a physical therapist student who was making rounds. And I pumped some balls and the tires on the bike. After that Melissa had Amaya sit and bounce on the trampoline a few times to stretch her knee. 
Then the girls kicked the soccer ball back and forth a few times. Sorry the picture is blurry, but she was moving so fast!
Pumping the tires on the bike helped Amaya's speed a whole lot! Both tires were about halfway empty so she's been having to work extra hard to pedal. Today she zoomed! Melissa had her ride down the hall, up the hill twice then back to the gym. 
Here she is on her way down.  
Back in the gym Amaya climbed up the ladder three times. 
      Amaya pulled herself across the gym in the red scooter toward the bench to start bends. Next came bends. Amaya's knee was at forty-six degrees to start and quickly go up tot sixty degrees. After seventy she started to slow down a bit. At eighty she stalled a bit, but then when the pain started up we told her to just get it over with and she did. In ten pushes she got up to ninety-one degrees. Not bad for a Monday. After bends Melissa taped Amaya's knee. We told her that Amaya's pain has been so low and the best since she had the fixator put on. I let her know that it was time for a new referral to be processed because Amaya only has three more weeks scheduled. Melissa asked when we see Dr. Nelson next (not until the 27th of this month). But since that appointment and the end of her scheduled therapy sessions is about four months after Amaya stopped lengthening (June 4th she stopped). Melissa said that she will email Dr. Nelson first to see what he wants to do. At this point he might not want to order more therapy if he'll be taking the fixator off the next week or so (after her therapy runs out). Or he might say to order more therapy until he sees the next x-ray. It's crazy to think that we're reaching the end of life with a fixator. But, since he originally told us to plan on it being on for ten months, that's what I'm doing. I'm optimistic and hopeful that it'll be off before that, but I'm not counting on it. There's a lot of unknowns, a lot of wait and see, and a lot of wondering that goes with life with a fixator.This is just another part of that. Hopefully we'll get some answers soon.

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