amaya at lake

amaya at lake

Monday, July 16, 2012

Soul Surfer

       There's quite a bit to report form the past few days so I'll try to be concise, because sometimes my posts get cut short when they run too long. 
     On the drive down Amaya was playing with her DS and adjusting the controls. She said, "this says disabled, does that mean I'm disabled?" I explained that it was a setting for the game, that something was turned off and not talking about her at all. Which just proves my point that disabled is not the best word to use when describing people. The girls both had dentist appointments before therapy so we had to rush form one office to the next. the dentist pointed how mature Lidie seemed this time around. I said that I had seen a big change in her maturity level ever since Amaya had this surgery. When we arrived at therapy they told us that the appointment had been canceled back in June. There was a misunderstanding because when we were called in June to reschedule they only had us reschedule Thursday's appointment not Friday's as well. So that was a bit frustrating, especially after Thursday's low number of 85. But, thankfully at least we're past the crucial stage of lengthening. I made sure that we did therapy at home later that day. We also did stretches on her hip and hamstrings before bed.
Saturday and Sunday
     The girls stayed home, relaxed, played, played with water, watched movies, and kept busy while I went to my book club. They had lots of fun with dad and I enjoyed my break from home.  Sunday we went to spend the day with my family. Amaya waled the entire time we were there and surprised my family with how well she was doing. They were very impressed to see her x-rays, to hear that she was swimming, that she was signed up to start a swimming class, to hear her progress at therapy and how well her bone is healing. One of my cousins asked how and how often do I take off the fixator so that she can play. I told him that we don't take it off at all, but stays on for the entire time. He was in shock, he thought it was like a brace that could be removed every once in awhile to give her a break. I had Amaya show him the fixator and explained how the pins are screwed into her bone to hold it in place. This is the first time he's seen it up. Seeing it up close,was different than the photos. He said that Amaya was a "warrior" and that he couldn't believe all that she's been through and how much strength she's had to show. I agreed and let him know about some of the challenges she still faces (infections, gauze sticking, scabs pealing off, achy pins, therapy, etc). He was just amazed by her, which was nice to hear. Then he said, "well you guys too. You've had to be so strong. I couldn't imagine my daughter going thru this. I couldn't take it. You two are so strong." I thanked him for his kind words and acknowledged that yes sometimes it is very painful to see you child suffer as she has, but I told him "we don't have a choice. Amaya does it, and she needs us, so we do it. But, yes it's tough." Then my aunt chimed in, "well I wonder if maybe God gives these kids to parents that he knows can handle it, because you two are doing so well." My other aunts agreed and praised us, which was very humbling and nice to hear.
    This morning we woke up early and the girls asked to watch Soul Surfer. Its a movie based on the true story of Bethany Hamilton. When she was thirteen years old a shark attacked her and took her arm off. within a month she was back in the water surfing and within three months she was competing in surf competitions. I had seen the movie about a year ago and enjoyed it but wasn't sure if the girls would be ready to watch it. But, they both enjoy it and aren't afraid of the shark scene at all. Amaya really enjoys Bethany's determination, and resilience and can relate to her on some levels. In once scene a little girl asks her mother "what happened to her arm?" Amaya said, "I remember when I left the hospital and people said that too. I didn't like it." As I watched it today I related to her parents more than I had the first time I saw it. Their fear, pain, adjustment, frustration, etc. all seemed so similar to our struggles. Although losing an arm is different that wearing a fixator some things are similar. And some of the emotions that we parents deal with are similar.
    After watching for awhile I realized that we only had half an hour to get ready to leave for therapy (I thought our session was later today). We rushed to get ready then left. On the drive down I realized that not only did I forget to give Amaya Tylenol, but I didn't have any in the car. Ugh, I was so frustrated. Luckily our extra cushion time came in handy and we ran in to a pharmacy and bought a bottle. The bad thing is that we had to pay double what we normally pay, but at least Amaya wouldn't be in pain today at therapy.
Melissa had Amaya start by watching her walk. She noticed that Amaya
Then Melissa had Amaya take steps as she held onto her. Melissa worked on each step with Amaya; giving instruction, correction, and encouragement.
Next Amaya went from a standing to sitting position several times. Each time working on bending her knee.
Then Amaya walked out into the hallway and rode the bi-scooter down the hall and back. 
As she was riding she asked if she could play soccer with Lidie. Melissa said that wold be fine. Amaya and Lidie did pretty good. It seems like Lidie might enjoy being a goalie because she keeps jumping to catch the ball and didn't want it to pass her. Amaya almost lost her  balance once trying to bend her knee enough to kick the ball hard.  
Inside Melissa had Amaya do bends with the yellow band and asked if we still do our bends at home. I told her that we use our band pretty much everyday, which she was happy to hear. Then she used her hands to bend Amaya's leg. She told us that as her leg bends the hamstrings (bottom of thigh) do the work while the quads (top of thigh) do the stretching. I'm sure she's told us that before but I kind of forgot it. I just figured the top muscles would be working since its the one bending. It's pretty interesting how the body works.
Then Melissa had her ride the bike a bit before starting bends. Amaya's starting measurement was 40, which isn't bad but lower than it has been. With a couple scoots she got it to 50. After doing only thirteen pulls she was in the 70's. She worked hard, but Melissa had to remind her to keep her head up during bends. In just three minutes and forty two seconds she reached her goal for today, 95. I was quite happy especially after a long weekend. After her bends her knee measured at 48 degrees at a resting position.
Lidie asked Amaya for a ride so this is what we looked like on our way out. The girls got quite a few smiles. I can't believe it doesn't hurt Amaya's leg at all. 
     When we got the mail today I saw that we had a bill for $1,300 from the hospital. I was a bit confused since our co-pay should have covered all the costs. So when we got home I made several calls, was on the phone for almost two hours, dealt with some helpful and some not so helpful people only to be told that the people I need to talk to wouldn't return until 8 a.m. tomorrow. I was quite frustrated by the conflicting information, the run around, the confusion, lack of help, and by having no resolution. I'm hoping the people I speak to tomorrow will be a tad bit more helpful. It stinks that this has to be a part of taking care of Amaya. It's certainly not my favorite part. I also had to call to follow up on her physical therapy referral that hasn't been processed yet. But, we have a couple of weeks for that still and the ladies  I talked to were helpful, which is always encouraging. 

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