amaya at lake

amaya at lake

Thursday, May 10, 2012

Grease

    We didn't have therapy today until one o'clock so we had the morning off. The girls got to relax, watch Grease (again) and play. I got to do some laundry, vacuum and read a magazine. Amaya practiced walking up the stairs, did squats when she washed her hands, and stood to do knee bends/squats during commercials. When I did Amaya's stretches and started to get her ready to go to therapy I noticed a change in her. Her lighthearted happy mood turned to a tired, worn out one. It broke my heart to see her that way. I tried to encourage her, remind her how close we are to the end, and how much she's accomplished. I tried to inspire, motivate, challenge, and even bribe her. I felt defeated, ill equipped, and overwhelmed. I stepped away to give us both a break. They weren't kidding when they said the end is the hardest. On the ride down the girls listened to the Grease mix (over and over), drank some water and had some fruit.  As we parked I reminded the girls of the rules, goals and expectations at therapy then hoped for the best.
      Therapy today started with jumps on the trampoline. Amaya did great and was able to jump on her own. I was talking with Melissa and wasn't able to get a video of Amaya jumping. Melissa asked how Amaya did after therapy yesterday. I let her know that she wanted to be left alone for a few minutes but, then was back to normal. I told her that we talked with Amaya about keeping a good attitude. Melissa was very understanding and accepting of Amaya, "it definitely hurts." She said that a lot of the younger kids that she's worked with scream during the entire process. I couldn't imagine that, this is hard enough.
Amaya had a great attitude all during therapy; she was laughing, joking, and very cooperative. When they would ask her to do something (or do it again) she just smiled and said. "okay." Awe, my sweet, brave, strong, amazing girl. She rose to the occasion. I was so happy and proud.
      After the trampoline Kim wheeled Amaya to the gym to work on the stairs again. Today Amaya walked up and down the stairs all alone for the fist time! She was wobbly, and had a harder time going down than up, but did pretty good for her first time.

Here she is walking up by herself for the first time! 

Here's the downstairs. She had an easier time on the small steps than on the regular size ones (she has to bend her knee more on the regular sized ones).

While Kim and Melissa massaged Amaya's thigh they joked about the snake and diamonds in her leg (that's what they call her tight quad muscles). Kim wrapped the exercise band around her leg and Amaya's so that Amaya could do bends while Kim massaged her leg.

     Kim asked Amaya if she wanted to do forty-five bends, but Amaya said no and decided on half (twenty-two and a half). As she did them she counted by halves and ended up doing the full forty-five. Next came the knee bends; we all got into our positions. Kim got beside her to measure, Melissa is next to her encouraging her, Lidie is hugging, playing and distracting her while I sit in front of her. She got seventy on her first bend, far from her goal of ninety-one. I held her face, encouraged her as she pushed and cried. On her second bend she got ninety-two! We did one last one, to see if she'd go higher and to do an extra stretch. She was only able to get in the mid eighties range, but held the bend. On our way out we ran into an old student and family friend Launey who has been going to therapy for a year now. He looked great and encouraged Amaya.
    Later as we shopped at Trader Joe's for blueberry cider for Amaya (her reward for today) two ladies talked to us. One talked with Amaya, "does it hurt? Are you almost done? Hang in there sweetie." She was sweet, kind and empathetic. Another woman made eye contact with me then said "Ugh, my daughter had that. It's not easy, good luck." Sympathy and empathy are always nice and welcome.
   When we got home the girls started to dance and have a dance contest; Amaya's dancing included some brake dancing on the floor. She had good rhythm & balance and it was funny to see her having fun. I gave Amaya her bath (dad's been doing it the past two nights). I looked closely at her pins because they've been bothering her. Her skin is itching and her skin is sticking to the pins. I noticed grooves in the pins (like a screw); I don't even want to think about how they put them in her bone. Ayayay. She fell asleep quickly; within a matter of minutes. As I sat there watching her breathe I was filled with tears.  I can't explain how draining and difficult this all is. But I'm just going to enjoy the calmness of her sleeping, and be thankful that she's getting good rest.

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