Glee does it again

     Last night's episode of Glee was pretty cool. In the episode Quinn was in a wheelchair from a car accident that she had on the previous episode. About half way thru the episode Artie takes Quinn to a skate park for senior ditch day. The skate park is filled with many differently abled people (with prosthetics on their legs, arms, some in wheelchairs, some with no legs) skating, rollerblading, skate boarding and having fun. It was nice that their wasn't just a token person in a wheelchair, but the whole scene was full of people with disabilities. It was nice to see! When I showed it to the girls today, they loved it! Amaya thought it was so cool that people were doing such cool things, regardless of what their bodies were like. She especially liked the person who was skateboarding with their hands because they had no legs. At physical therapy today she told Cassie about it. She was so excited, animated and full of smiles as she told the story. It was great to see. If you get a chance to see it, its pretty cool.
     A big highlight to my morning was talking to Christine. Although I just met her last week, I feel a great closeness to her already. The fact that we are traveling on similar medical journeys with our children forms such a strong bond. She has a true sense of understanding that I greatly appreciate. Talking with her for just a few moments encouraged me, remind me that all the stress I'm feeling is all "normal," and a very real part of this journey, and reminded me that things could always be worse.  I thanked her for calling, but had to end our call shortly and had to rush off to our physical therapy appointment.
     Before we left for therapy I had to bundle us up because it was raining. This was our first time going out in the rain. I put a long sleeve shirt on Amaya under a dress and then some knee high socks. As we drove we drove thru hail, fog and rain and I couldn't help thinking of the Post Office's motto "thru rain, or hail or sleet, or snow..." something, something, they'll always deliver. Amaya asked if we should be getting a day off because of the fog and rain, and I said no. At therapy Cassie couldn't find a goniometer (the thing they use to measure the angle in Amaya's bend) so she just looked with her eye to guess the degrees. She said it looked like between 95 and 100 degrees. She said that Amaya is doing really well maintaining her range of motion. Cassie also said that Amaya was walking a bit better with her walker. Amaya asked if she could walk up a ramp, but Cassie told her not until she can fully bear weight (FBW). Amaya thought it was cool to say "FBW."
     After therapy we headed to the hospital to pick up Amaya's prescription, but when we got there there weren't any parking spots. Seriously, none. So we decided to do some shopping at Trader Joe's then come back. As we left a guy outside asked me if I wanted to sign some petitions. When I stopped to talk to him he asked Amaya what happened to her leg. She said, "nothing, I was born with a short leg." then he looked at me. I told him that she was having her leg lengthened and that's why she was wearing a fixator. He kindly looked at Amaya and said, "God made you special." She smiled and said, "thank you." Then he told us about Wilma Rudolph. He said she had the same thing Amaya had and that we should look her up for inspiraiton. I smiled and thanked him. I had read a children's book to Amaya awhile back about Wilma Rudolph. Wilma got polio when she was young and because of it her legs were twisted and she had to wear braces on her legs for three years. She worked hard and eventually got her braces off and then went on to become an olympic medalist. She's a pretty amazing woman if you ever want to read about her. When we got home I looked her up on the internet and showed Amaya the pictures of her again to refresh her memory of her. She remembered that polio was the same thing that made Frida Kahlo's leg shorter than the other. Every time I talk with Amaya about what others are going thru or have gone thru she is distracted from her own pain and is able to empathize for others.
     We returned to the hospital and were able to find a parking spot quickly. We went up to the pharmacy and picked up Amaya's antibiotic. Unfortunately the pain medication wasn't ready yet (they were still waiting for approval from her doctor), but she has enough for a few days, so we should be okay. When we were leaving I noticed a lot of people starring at Amaya's leg. Outside she noticed a teenager with a big scratch across his face and eye (like road burn). Amaya and him exchanged a look, and a smile. He looked at her so empathetically and gave her a head nod. As we stepped away Amaya said, "oh wow, mom, did you see that guy's eye? Ugh, he must be going thru a tough time." It's funny because he seemed to be thinking the same thing when he looked at her. It's always interesting to see when something like that happens. When she sees someone else and thinks they're situation is so much worse than hers, and they think the same of her.
     At home, locking the bar in her fixator was tough today, her muscles were really stiff and tight. I had to do a lot of stretches to get it locked in place. Once it was in she complained of a great deal of pain. It's hard to see her so miserable, but I know that it makes bed time so much easier for her. I wish that the pain would ease up during the day time, but it hasn't yet. At night she's been falling asleep fairly easily, ever since we started locking the bar in during the day. Before bed Amaya asked me what PFFD stood for. She had a guess, "Pathetic, Fashion, Feeling, Doctor." I asked her if she knew what pathetic meant and she said no. Once I told her then she decided pathetic wasn't a good word after all. She thought maybe popcorn or prosthetic would be better. Then she asked what it really meant. I told her "Proximal Femoral Focal Deficiency." She made the same confused look that many people have made over the years. I broke down each word for her and how it relates to her body and situation, then it didn't seem so confusing. Then she sipped some chamomile tea, while we read our bed time books then she fell asleep while I rubbed her knee (it took about thirty minutes for her to fall asleep).
     

 Amaya's heal finally healed from her bedsore. It's crazy to think that it only took a few hours for her to get it, but five weeks for it to heal. It's still sensitive to the touch, but a lot better than before.

Amaya all bundled up doing her stretches. She wore long socks to keep her legs warm and a big coat. She also had a blanket over her legs.

Practicing walking. Amaya is getting excited to be able to start to fully bear weight (just a few more days, hopefully!). 

Lidie "vacuuming" the playroom at therapy. Notice she's actually wearing jeans today. The first time in about a year.

More walking exercises. 

At the grocery store I caught Lidie jumping and making faces at her reflection. Thanks to her I had a couple of good laughs today, and she managed to embarrassed me at Trader Joe's. 

Lidie remembered that the hospital has "ice cream cone cups." So we had to make a stop and get several drinks of water. 

While waiting for our prescription, the girls managed to keep busy. You can't see Lidie, because she's hiding behind Amaya playing. I'm really amazed and proud of them for how calm and patient they are during all the wait times that we encounter in a day.