amaya at lake

amaya at lake

Wednesday, June 6, 2012

Still have work to do

      Last night Amaya had a good night's rest, even though she woke up once and walked up stairs to get me. Every time she does that it kind of freaks me out and I worry that she'll fall. She fell back asleep as I rubbed her leg and stayed out the rest of the night. She didn't need any more pain meds throughout the night and slept in until six a.m.. This morning she went to school for almost two hours then went to physical therapy. Her teacher said she did great and she had fun. 
    At therapy she did stretches, rode the scooter, used the train (bi-scooter), did the stairs, bends then measured her knee. She started at 53 (which is a great starting point, her highest in a long time), then in fifteen minutes got to 85. Amaya's attitude and behavior at therapy today were terrible. Seriously, I was embarrassed by her rudeness, lack of cooperation and her attitude (she gave up and wouldn't try). It was so sad and frustrating to see her be so rude to Melissa and have such a bad day. I know we all have bad days, but man this was bad! What dad tells her is true; you can do anything that you set your mind to. I've seen her reach and exceed limits when she set her mind to it. Unfortunately today she set her mind at  being uncooperative and not doing her best, and that's what she did. We had a pretty serious talk afterwards and she lost two privileges. Melissa told her that she really needs to keep up her work at home and challenged her to have her knee already at 45 degrees when she comes in tomorrow. Hopefully today was just a fluke and that she'll be back to her normal self tomorrow.
    We also made a stop by the Beaver clinic to pick up a form for Amaya's school and brought some flowers for Marilou as a thank you for all her help. At home we made sure to do her stretches, wear her ankle weight and do her PT homework. I had taken the last two days off, but its obvious that we can't afford to do that. Now that she's done lengthening she still needs to work hard and not give up (we had a talk about that today) until her muscles stretch and things get easier. We've still got our work cut out for us.
     Tonight we got an email from "Alison our fixator friend" in New York congratulating us on being done lengthening. She pointed out that even though it takes eight months for Amaya's new bone to harden  (since she grew 8cm) the past three months do count towards that time. We'll obviously have to double check with Dr.Nelson, but that means that we could be having the fixator removed as early as November or December. Ah, some relief is in sight. Our goal use to be the end of lengthening, and now that its come its hard to stop, enjoy and relax because we  have a new goal (hardening bone and stretching muscles) and our new end date is about six months away. Thank you all for sharing in our success and trials. We appreciate you and the love you send our way.
Here's what Amaya's fixator looks like now.
The girls cuddling while waiting for therapy.
Amaya doing stretches with Melissa.
Practicing walking down the stairs. She still has a hard time bending her knee enough to step how she normally would.
Melissa had Amaya bend down and try to put her hands down flat on the floor.
After sitting on the side of the pit she fell back "accidentally." 
The girls grandma threw them a celebratory tea party to celebrate the end of lengthening. 
The girls with Grandma Lilli after their tea party

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