amaya at lake

amaya at lake

Wednesday, July 4, 2012

A visit from uncle Cody and Arooj

      Last night and the night before Amaya has been waking up at about two or three in the morning with pain. I've had to give her pain meds and rub her knee to help her fall asleep. I was so tired all day yesterday, you'd think I'd be use to interrupted sleep by now, but I just don't seem to ever recover. On Monday night she also needed a teddy bear under her fixator; the weight of it pulls down on her leg, skin and pins and hurts, but propping it up helps. Sometimes she uses her right leg (she sits on it) and that helps too. Last night as I put her to bed after I rubbed her foot she asked if I would push her kneecap down. She had me push so hard that my fingers hurt and fell asleep. But it helped and she fell asleep in a few minutes. Yesterday when I gave her her shower all three of her pin sites were stuck. This is the first time that all three sites were stuck, ouch! She had lots of drainage, gunk and scabs that pealed off. It was a painful shower and she was in tears for most of it. We haven't had a rough shower in a few months so it was sad to go back to that. 
    Today uncle Cody and aunt Arooj were visiting from Sacramento and were able to go to therapy with us. As we pulled in we heard the Eye of the Tiger (its been a few weeks since we did). Amaya was singing along and exited to work hard. After her work Melissa measured her knee it was in the 50's then Amaya said, "let's make it to 60." With a small push she got 61, so that's were we started her bends at. Her goal for today was 107; quite a lofty goal. She did her routine and in about seventy pulls she was at 106! That's her highest number since she stopped lengthening a month ago. She beat her last high number of 105. I asked if she was trying to impress uncle Cody, but she said, "do you know why I did it? Because I want to get to 110 again." That resilient, determined drive has helped her so much and makes me proud. After therapy we ate lunch with Cody and Arooj a a delicious veggie sandwich shop. The girls loved spending time with them and were glad they got to go to therapy with us.
    After that we stopped by the grocery store to get the ingredients for stroganoff since they'd be having dinner with us as well. As we shopped a woman stared at Amaya, not the normal quick glance, or curious look or smile. No, this was what I call the rude stare (and unfortunately we've gotten this stare quite often). The woman was very obvious, stopped where she was, made a face of disgust, and kept turning her head and almost following us. Its so awkward and bothersome. As we walked off I talked with Amaya. I told her that maybe the lady thought she was cool and she couldn't help but looking, Amaya said "no I think she thought it was weird." By the look of her face that's the message she sends, wether she realized it or not. We tried to brainstorm what we should do or say when people do that. I suggested smiling or saying hello. Amaya said "I can say, this is my fixator, it's no big deal." I told her that was a good idea. She added, "maybe I can say. Please don't stare, it makes me feel bad." That might work, because I don't think people realize they do, and Amaya shouldn't have to deal with their rude stares. 
     After dinner we stayed up late looking at baby pictures of Amaya and Lidie. It was very sweet to see just how much they've changed over the years. And watching the old videos you can see some of the personality that's still here. As Amaya looked at her baby pictures, she asked if you could see her short leg, you can if you look closely so we showed her. 
Amaya and uncle Cody looking at the tornado lab that Cody brought over for the girls. Lidie's fascination with tornadoes continues and she has spread the joy and knowledge to Amaya and us. Lidie can tell you what states are in tornado alley, the cloud names in storms, the different scales of tornadoes, and many other tornado facts. Pretty impressive for a three year old.
Uncle Cody, aunt Arooj and the girls waiting in the lobby at physical therapy.
Amaya stepping over the "river rocks" in the parallel bars. Melissa always calls them river rocks because she tells Amaya that when she's out walking by a lake she'll come across rocks and sticks in her path and she needs to be able to step over them. It still takes Amaya some effort to bend her knee enough to step over them. She tends to lift her hip to help her instead of just bending her knee. After she walked six times over the rocks Melissa asked Amaya if she wanted to do ten. Amaya subtracted to see how many were left and when she realized that was only four she agreed.
After that she worked on the total gym machine. Melissa asked Amaya to aim to have sixty as her starting number for today (the number before she starts her bends).  Lidie got to pick how many bends Amaya did. She said five but Melissa suggested fifteen, so Lidie agreed. The last time she worked on here she did ten so this was an increase for her. As she worked another therapist asked if she was the same one who uses a walker sometimes. Melissa said, that yes sometimes she uses a walker or a wheelchair when she's tired but, she's doing so great. 
Then she rode the scooter around the trampoline five times. She wore her tennis shoes today, so they didn't slip at all.
Then she rode the bi-scooter to race Lidie, Melissa and I down the hall. She rode down and back then rocked back and forth to bend the knee some more.
Back inside she did some bends to lunge forward and threw some balls at Savannah (the painting on the wall). Uncle Cody helped pick up the balls that would bounce out, and even juggled a few.


  1. She is a brave girl and she is lucky to have caring people in her life.