Today both girls had their yearly check-up. They were both a bit nervous on the way there about getting shots. I wasn't too surprised when Amaya weighed in only five pounds heavier than Lidie, who is three years younger and seven inches shorter than Amaya. The doctor said that Amaya needs glasses, pretty badly so we'll be getting some soon. She's pretty excited about that. She looked at Amaya's bedsore and said it was a bit tender and she didn't like that it hadn't healed yet. So she's giving Amaya a referral to the wound center at the hospital to check it out and see what they recommend to help it heal. She thought they might prescribe some type of orthotic to help protect the heel and let it heal. Dr. Dixon was very happy and proud of Amaya for how well she did with her lengthening this past year. She said she has another patient who will be having it done in two years and it makes her feel good knowing how well Amaya did. She said that Amaya serves as a good example of what can be done. She told Amaya that she can do whatever she decides to do. Amaya told her she wants to be an orthopedic surgeon and Dr. Dixon told her she believes she'll do it. Dr. Dixon told Amaya that she'll be able to help other kids just like her. Then she told Amaya about a famous orthopedic surgeon who is a dwarf and has helped others. On our way out we got to see Marilou and give her a hug. She's such a huge help to us and its always nice to see her face to face and thank her for all her help and hard work.
After running some errands we had our first physical therapy session. I had Amaya use her walker to go in, and she was a bit frustrated with me and hoped she could use her wheelchair instead. But since she had used it in the stores we went to I thought she needed to practice using her walker. Today we worked with Jay for half an hour. We got to see Melissa on her way to lunch. I didn't give Amaya any pain medication since she hasn't been needing any lately and I wanted to wait and see how she did without it. She told Jay her pain was at a zero before starting her session.
We worked in the adult gym. Amaya did great; she worked hard, followed directions, tried hard and did her best. She had no pain and didn't need any pain medication after her session or before bed. While she was working at a table I noticed another boy behind her with two fixators on. His were both on his femurs. I sparked a conversation with his mother. She said he just had them put on a month ago and he'll have to wear them for three months. I told her about Amaya's fixator and the seven months she wore it for. There was a moment of mutual empathy and silence. I told her that no one else can understand or appreciate what life is like with a fixator until they've had one. I tried to comfort her and give her my empathy, and support. Sometimes I think their should be a support group for parents of kids with fixators. Later as Amaya kept working I heard a cry that sounded very familiar. I turned back around to see that boy crying because the therapists were getting his knee to bend to ninety degrees. Ugh. I was instantly taken back to all those moments when Amaya cried out in pain. I looked up to see his moms face and had to fight back tears. I know what pain she felt. Its unbearable. Just the memory is hard to deal with. Jay told Amaya that she was there a few months ago and that he remembers her crying like that. I'm so grateful we're past that point.
Before we left I noticed that there were four kids in a small space who either had a fixator on now or in the past. All four are patients of Dr. Nelson. And like that mom and I said, "we're big fans of Dr. Nelson. He's amazing." I told Amaya she's a part of the "fixator club." The kids ranged in age from two to a teenager. They all wore different types of fixators for different reasons. Yet its a shared experience. These kids have endured, worked hard and are amazing.
After we left we went to another pharmacy to get replacement gliders for Amaya's walker. It was instant craziness. Amaya was tired and asked to ride in her wheelchair. I brought the walker in as well to try the new gliders on it, since the other two didn't work well. Halfway in the store Lidie was crying because she was tired and her legs were sore (from her shots earlier that day) and she wanted me to carry her. So I was holding her, a walker and helping push Amaya while trying to find the glider isle. I was flustered and tired and worn out. And dropping the walker a couple of times didn't help. Its crazy how quickly I could feel the extra stress and demands that therapy, and therapy homework bring. We got what we needed but Lidie had a meltdown in the car and I struggled to keep my patience. The evening was also a bit hectic because I was solo, since Josh was still in LA. Before I got the girls to bed I helped Amaya finish her school homework and then do her physical therapy homework. During the day I also had her rub and massage her scars, like Melissa requested. She was very tired and fell asleep within minutes. She was snoring by ten after eight.
I'm re-adjusting to a full schedule of school, therapy and all the normal things of life. Wish me luck. And patience. Pardon any grammatical errors, I'm a bit tired. Thank you for reading along and all your continued support.
The girls waiting to see Dr. Dixon.
Lidie wondering about what would happen at the appointment. She was so funny. When she got her shots she told the nurse, "hey! That hurts!" And before bed tonight she told me, "Mom, we really have to tell those nurses the shots hurt."
Jay had Amaya start by laying and lifting her hips off the table. After a few sets he had her lift her hips and hold them for a count of five.
Then he had Amaya squat and bend her knee. She got close to one hundred degrees on her first try! Jay double checked the goals Melissa wrote for her and they said 110 degrees was her long term goal. jay was excited, because he remembers all to well how hard and painful it was to get to ninety degrees. And he was excited that she got so close to her long term goal. After a few more squats she was able to get to 105 degrees! Cool, huh?!
To help strengthen the muscles in her hip and bottom Jay had Amaya alternate lifting her legs to the side.
Then Jay had Amaya step up on a wooden step to help her put weight on her left leg. He had her work on swaying from side to side to get her use to putting her weight on her left leg. He had her step with the left leg first and stay there a bit then bring the right leg forward. She did that a few times and he added it to our homework list. He said its important that she practice walking; leading with her left leg, stepping with the heal first, putting all her weight on the left side, shifting her hips as she walks, and standing tall.
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