amaya at lake

amaya at lake

Sunday, July 29, 2012

Swim Party

   After a rough night Amaya woke up rested and feeling good. She said she didn't remember crying or moaning throughout the night, which is nice. She had cried several times and complained of knee pain. She slept in our bed and that made it easy for me to rub her knee as she slept. That way I was able to get some sleep as well. This morning we went to our first pool party with PossAbilities. We were all excited to go, especially the girls. PossAbilities is a community group set up by the Loma Linda Medical Center for people with disabilities either by birth or by accident. I added a link to their page on the links section of the blog if you'd like more information.
    As soon as we got to the pool party I could tell  we made a good choice in signing her up for PossAbilities and for swimming. We were greeted by friendly families. And instead of staring they would ask about Amaya's leg and fixator. In fact the first person we saw said, "oh, is she undergoing a lengthening?" It was so nice to not have to explain everything to everyone. It was nice to be around other families, who although had different disabilities, all shared some commonalities. Some of the moms invited me to go to a mom's night out, which sounds wonderful! It was so nice to see so many children having a great time.
     Lidie made a friend within minutes. She was a few months older than Lidie and happened to be an above knee amputee. Lidie thought her prosthetic was cool. I thought it was cool that she knew that it was called a prosthetic. They played for most of the time and had lots of fun. Lidie asked me why Amaya couldn't take off her fixator like her friend could take off her prosthetic. I explained that they aren't the same thing, but I'm sure to a three year old they look pretty similar. Her friend will be having a lengthening in a few years and Amaya shared her fixator with her and her dad. Amaya let her touch it and look at the pins. I got to prep them for what's to come.
   It's a small world, their doctor is the one that Amaya went to see when she was a baby. While we talked about upcoming procedures I let them know about Dr. Nelson and the limb deformity center that they've started here in Loma Linda. I let them know that there is an option to get treatment closer to home. Sometimes I feel like a commercial for Dr. Nelson, but I can't help it. He's done such amazing things for Amaya and she's a walking testament to the excellent care that he and his staff provide. It's hard enough to be going through a lengthening, but to have to be so far from home only adds to the stress. Early on we had been told that we would have to go to Baltimore for treatment, so we're so grateful to be getting treatment here in Loma Linda.
   After we came home Amaya started having some pain in her top pins. She said they itched and didn't feel good. Although we washed them after swimming they still bothered her. So she asked to have an early shower so she could wash them well. Her top pins had some blood and were sore. After her shower her skin was tight, dry and itchy. She cried a lot and was very uncomfortable. I rubbed some coconut oil on her skin and that seemed to help a lot. Then I massaged her knee and foot. At bed time she was able to lock the bar in within five minutes (finally it seems like the muscle tightness in her hamstrings has subsided). Then she asked that I rub her knee so I did until she fell asleep. She's already moaned a few times, so hopefully she (and I) can have some restful sleep tonight.
Here's some video of Amaya swimming today. She swam for almost the entire three hours that we were there. She kept going back and forth from the wall to Josh, then would swim over to Lidie say hello then swim to the deep end and back. She did great! She was so tired by the end, so she rode out in her wheelchair. She'll be starting her swimming lessons next sunday, and is very excited for that.  
     Here's Lidie with her Bethany Hamilton Barbie. Bethany is the name of the surfer whose life the movie Soul Surfer is based on. The girls love this movie, especially Lidie. She watches it almost everyday and can recite lines from it. Since they don't make Bethany Hamilton Barbie's we had to make our own. She asked us to cut the dolls arm off, just like Bethany's, so we did. And she loves it! In fact she's sleeping with her right now. She had her doll surf, and swim, and play "just like Bethany."

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