Two centimeters

     I almost skipped posting tonight, to go to bed early and catch up on sleep, but realized that today is our twentieth day of turning the rod on Amaya's fixator and I couldn't skip such big news! That's exciting, because it means that Amaya has gained about two centimeters of length in her femur! We'll know for sure once we get x-rays done on Monday and see Dr.Nelson, but it's exciting nonetheless. Our goal during this lengthening is to gain eight centimeters (a little over three inches), so we're a fourth of the way down!
     My day started very early, when it was still dark, about five a.m. Lidie was crying in her sleep so I went into her room to check on her. I was so cold and decided to just climb under the covers with her. As I started to fall asleep, Josh came in and let me know Amaya was calling for me. So I walked down the hall to our room. She wanted me to rub her knee, she had some pain. Josh said, "she really loves you" he tried rubbing her knee, but she said, "don't touch me, I want my mom." Very sweet, but by the time I got in there she was asleep. She did mumble something in her sleep that I thought was funny and sweet, "I have love in my heart, sending it your way." She's so funny. I wish I knew what she was dreaming about.
     Today I had my book club and was looking forward to meeting with my friends to discuss the book, share good food, and watch the movie. We read Extremely Loud and Incredibly Close by Jonathan Safran Foer. It was a moving story that talks about a nine year old, Oskar (a somewhat quirky, maybe autistic child) and how he deals with his father's death. His father died on 9/11. I was very excited to read the book, but didn't get too far, since I didn't have a lot of time to read this past month. I did enjoy the movie a lot. It was such a touching, sad, moving story that brought all of us to tears. It was sad seeing this nine year old trying to make sense of things that even adults are struggling to make sense of. It made me think of Amaya and the many things that she's trying to sort out and make sense of. She's having a lot to deal with, process, and try to understand at a very young age; six. Even though she's very smart and mature for her age, she's still only six and some of her cognitive abilities aren't able to make sense of some things. The best we can do, is to help her as best we can to navigate through her thoughts, fears, emotions, and doubts.
    After I left I made a quick stop to the grocery store. It's so much quicker to go alone than to have the girls and a wheelchair to maneuver. We've been making decisions on whether something "needs" doing while we have the girls with us. Is it really worth the time, effort, and energy just to run in and grab something? Most of the time the answer is no. If I really need something I ask Josh to stop by on his way home from work. By the time I got home it was almost five o'clock. I missed the girls, and it was nice to see that even though they missed me, they had fun with dad. Lidie did say to me "I thought you were never coming back. I was just starting to love you." I'm not sure what that last part means, but it made me smile.
    I fed the girls, gave Lidie a bath then did physical therapy with Amaya. She did great with her therapy, even though it caused her some pain. After her therapy I gave her a shower, which she really didn't want to happen. She asked (several times) if we could skip the shower tonight and just do it tomorrow. In the shower she did fine. She asked if I could do it quick since she was cold and wanted it to be over soon, so I did. When I removed the gauze from the top pin sites, the gauze was stuck to her skin and pulled at it pretty badly. I could tell it hurt, and she cried quite a bit. I felt so bad, but even thought I did everything I could to minimize the pain, it still hurt her. When we got her down to bed she was still crying. We got her ready for bed pretty quickly. I stretched her calf and hamstring muscles before I screwed the bar in place, which seemed to help. She didn't cry as much and calmed down pretty quickly. However, it still took her an hour and fifteen minutes to fall asleep. Before she fell asleep, she cried a bit, asked if she could take the bar out, if she could take the fixator off over night, and said "I wish I could just walk up the stairs by myself." I tried to calm and reassure her as best as possible. Josh came in and between the two of us, we got her to sleep. It's nice to have his support and love.
    Thank you all for being a part of this journey with us.