June 1, 2012

Darth Vader

     I didn't post last night because I fell asleep at seven thirty when I was putting Lidie to bed. Amaya had a rough night on Wednesday (needed pain meds twice, and I had to massage her knee and toes often). Last night was a bit rough too (she fell asleep okay, but was up at midnight until one).
A quick recap of yesterday...
Amaya got ready for school but after driving off she returned. She was in too much pain to go.
Lidie accidentally bumped Amaya's leg as she walked by her, ouch!
I got a call from Marilou (at Beaver clinic). She tracked down Amaya's PT authorization, got it faxed over to her office and was going to expedite it. Hopefully we can make Amaya's appointments on Monday. Hooray! 
I got a call from Dr.Nelson's office saying that there wasn't a resident to see us on Monday when we have her appointment scheduled. Dr. Nelson will be in Haiti. That is Amaya's last day of turning her rod, and the resident was going to lock the bar in place. When I mentioned that the woman  said she'd get back to me. I'm still waiting for her call. I was a bit stressed, but Josh said to "breath, boo, breathe."
Amaya got off the couch, but slipped and fell, landing on her hands. It didn't hurt her leg, but startled her.
We had errands to run for Amaya's school. Amaya was in a lot of pain and cried almost the entire time (about an hour). It was quite stressful, and sad.
On our way to therapy Lidie had to go potty, bad. 
When we got to therapy Lidie was running to go potty and fell, ouch!
Before therapy we played on the playground for ten minutes. I had Dad call Amaya to remind her to stay calm, be kind, and work hard. 
At therapy,
Melissa massaged her knee. She said pain is normal at the end (her muscles are at the end of their limits and they hurt). The bones usually reach their limits at 8cm, I asked Melissa if 8cm is the muscles limit as well. She said that usually 6 or 7 cm is the most she's seen, that's where most muscles stop, but Amaya's flexibility and hard work has helped her reach 8cm.
After therapy Amaya was worn out. We skipped our other appointment, and errands and went straight home. Both girls napped on the ride home.
At home Amaya got a call from Darth Vader (aka dad). But she totally believes it was the real Darth Vader. They talked for several minutes and she had the biggest smile on her face! He told her he reads her blog, knows how hard she's working, reminded her to be nice and worked hard. He asked to talk to Lidie but she refused. I over heard her explain to him that she has to work hard to get to 90 degrees everyday, but that she'll be back in the 100's soon. She also told him that she's almost done lengthening. I asked her where he lives and she said, "in a galaxy." She went on, "He said I definitely have the force and I can do everything!" Just the motivation she needed.
I wrote Dr.Nelson an email at one in the morning (I was up with Amaya) asking about her top pins, and the confusion with her appointment on Monday. He wrote back this morning and we're going to try to see him after therapy and in between his surgeries today.  
At therapy Lidie played with a bus, house and little people.
Amaya rode the bi-scooter after massages.
After the bi-scooter Amaya did ten knee bends (standing to sitting) and held each bend to a count of ten.
     Today when we started started measuring Amaya's knee measured at 60(that's the highest its been at in weeks). Then she quickly got up to 70,80,86. Those last four degrees were hard to get to. She got up to 89, then 90! She was tired, sore and crying. After reaching 90 degrees, another therapist Jay offered Amaya his ice pop as a reward for working so hard. It's nice to have so many therapists on Amaya's side. Even though they don't directly work with her many give her high-fives, wave, encourage her and cheer her on. 
I looked at Amaya's top pin sites since they were bothering her so much. The scar tissue next to the top and middle pin are bubbly.
Here's a photo of the top of Amaya's fixator now. There's only a small space left to fill. When she's done lengthening the top and bottom piece will be flush. 

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