amaya at lake

amaya at lake

Saturday, August 25, 2012


     On Thursday I got an email from another PFFD parent who said she's been reading the blog and gets inspiration from Amaya's "drive and sheer will to get better." Between that email and a comment by our friend Kristine on Facebook I was so touched. It means a lot to me to know that others are following Amaya's journey, that they see her strength, and determination. I'm touched by those who say that she inspires, motivates and encourages them. I know she does that for me. 
    At school Amaya got hit on the fixator twice. During one recess a friend bounced a basket ball and it hit her on her bottom pins. She said it hurt a lot, but she stayed calm and told her friends to go get her teacher then she asked them to get her dad. Josh was on his way to his other school, so our friend called him on his cell phone. He came back and checked her out. Her pins weren't bleeding, and she seemed fine. She already had Tylenol in her system so she was okay pain wise. Josh called me to give me an update. Honestly I was hoping it was her head or something else that got hit. But when he said, "on the pins" my heart sank. I was proud of her for being calm, cool and collected and relieved that she wasn't hurt badly. At another recess a boy was being impatient and rough at the drinking fountain. He pushed his way in front of Amaya and bumped her on the fixator. Amaya and her friends told a rec aide who talked to the boy. She said that her fixator helped protect her because the boy hit it and kept him away from her pins. 
    That night we had open house at school so she had a long day. Before open house the principal told me she saw Amaya walking around the school and said she looked good. Then a teacher, our friend Danielle, came over to check in on Amaya. At P.E Amaya said she did a lot of bends and worked hard. When I talked to the P.E. teacher he said he doesn't want to push her too hard. He asked me to remind Amaya to let him know when she's in pain, needs a break, needs Tylenol, or something is too much. I'm so grateful for all the staff who look out for Amaya. When we got home we celebrated Josh's birthday with cake, and gifts. 
     Friday Josh had the day off and got to go to therapy with us. Amaya wore her ankle weight on the way down and as she rode in on her wheelchair. On the ride down Amaya ripped her old tape off (she's been doing it in one clean rip. Ouch! But she's learned its easier to just get it over with than drag it out). Melissa applied new tape then had Amaya climb up and down the ladder to warm up. Then she rode the bike, the scooter, and then began to sit and stretch her knee. While she was doing those stretches I mentioned to Melissa that Amaya has been tripping lately when she walks fast so they worked on that in the hall. 
    After that Amaya started her bends. She didn't tell us what her goal was because she wanted to surprise us with a high number. Her knee was at forty-nine degrees to start then at sixty-one in seconds. In thirty seconds she was able to get up to eighty degrees! Once she gets to this point the pain really starts. She started crying. It was tough, but she kept going. At one point she said that she couldn't bend anymore, but she was already over ninety degrees. After a few more bends Melissa let her know that she was at ninety-six degrees and asked her if she wanted to keep going or stop. Amaya decided to stop. She said she didn't reach her goal of one hundred, but we were all impressed with ninety-six. It's always hard to see her in pain, to know that its part of her day, but such a relief when its over. She always seems to recover pretty quickly, within a few minutes. 
   When I picked her up from school she said her friend pushed her, jokingly, but Amaya fell to the ground. I don't think her friend realized just how hard she pushed or how prone to falls Amaya is. Thankfully she was okay. Last night she cried and moaned several times, more than she has in a week. There's nothing worse then seeing your child in pain. I laid next to her with my hand on her knee for hours.  Each time she moved, moaned and cried I teared up. It's sad to see her in pain. But I feel privileged to be able to give her some comfort, and relief. 

Here are the pictures the girls made Josh for his birthday. Lidie painted him a pink tree (because there aren't any in the world) and Amaya made the rainbow picture.

After climbing up and down the ladder she threw the bean bags into the ball pit. Then she climbed into the ball pit to get them out. I love watching her climb in and out with ease.
      As Amaya rode the bike Josh was impressed by how fast she was able to go and her increased balance since the last time he got to see her ride. In the beginning of the video you can hear her say, "thanks, dad." Josh had just told her she was doing a good job and that he was impressed with her. She went so fast! 
Melissa had Amaya ride the scooter in figure eights.
     I mentioned to Melissa that Amaya has been tripping on her left foot when she tries to walk fast/run. I noticed it last week when she tried to get from one side of the kitchen to the next. She moved fast and her toes caught on the floor, she tripped and almost fell. Amaya said she trips like that at school too when she moves fast. As soon as I told Melissa she had Amaya go out into the hall to work on a better way to move fast. She had her start slow then build up to a faster speed. Every time she walks she has to concentrate to step with her heal first and to lift her knee. She seems to have a harder time remembering to do that when she's moving fast. Melissa reminded her that the most important thing to remember when walking fast is to step with her heal first. At the end of school Amaya said, "Melissa really helped me! I didn't fall once!" At the end of the video you can see her loose her balance just from stopping after walking so fast. I let out a nervous laugh, but inside my heart stopped. There's a whole lot of worrying that comes when your child is in a fixator.
    Watching her was a bit emotional for me. On one part I was sad that she has to work so hard just to walk fast.  It's those little things that seem to bother me. Yet at the same time I was proud of her for how hard she does work, without complaining to do what many of us take for granted. Later as I thought about it I realized that not only is she having to learn to walk and maneuver her body with a fixator on, but with a new leg as well. This is the first time in almost seven years that she is walking with two level feet and a stable knee and hip. That's amazing and wonderful! Prior to these surgeries she had two ways of walking and getting around; one with her shoe lift on and one without. Without it she would stand on her right leg and on her tippy-toes with the left. With her lift on she would swing her left leg out kind of like a pirate. She adapted to both ways of walking and moving around. I'm optimistic and hopeful that she'll learn to walk, run, climb, etc. without her fixator and with her new hip, knee and longer leg. It's a lot to learn, but she'll do it! Just as she has in the past, she will overcome challenges and amaze me.

1 comment:

  1. Cecilia... you are doing a GREAT job... and if you want to know where Amaya gets her strength from, look in the mirror. I so admire your daughter, but I also ADMIRE her mom... you inspire us to be STRONG! And when you write about those heartfelt moments-- I really feel it and know your pain and joy! So tonight YOU get an extra special prayer. Keep being strong and know that your this season for your family-- this time in your life is not in vain.... your family is giving so many other people hope!! Love ya girl!