amaya at lake

amaya at lake

Saturday, September 8, 2012

Back to her own bed

     I know most six year olds sleep in their own bed, and Amaya use to as well. But ever since she had her fixator put on she's spent most of the past six months in our bed. Mostly because she would be in a lot of pain at night and it was easier to keep her in our bed so that I could massage her knee, leg or foot as needed and still get some sort of sleep (for both of us). But last night and tonight she's sleeping in her own bed. Since she's been having pretty good nights for about a week now I asked if she wanted to give it a try again, and she said yes. She did pretty good last night, but woke up about four times asking for water then I massaged her knee to help her go back to sleep. At around four Lidie woke up and woke Amaya up with her cries. Amaya was sweet and told me to go take care of Lidie first then come back in, but she fell asleep on her own before I got up. I didn't get the best sleep, but I was glad that she's trying to sleep on her own again and I was happy to not get bumped or scratched with a fixator throughout the night.
   Yesterday I got a call from Amaya's school (I got a bit nervous when I noticed it was the school) they said she was in the office complaining of stomach pain and feeling like she was going to throw up. She usually doesn't complain too much, so I decided to go and pick her up. By the time I got there she was back in class and asked if she could stay because she wanted to share a bird's nest with her friends. Her teacher let her share it then we went home. As soon as we got home she had to rush to the bathroom. She ended up not throwing up but just having diarrhea. That antibiotic seems to be messing with her tummy much more this time around than ever before so I'll be happy when were done with it (on Sunday). Amaya said that she had to go to the office earlier that day for pain medication. She said she was playing with her friend when she started complaining of pain then he said, "maybe you need your meds." Then he walked up with her to the office to get some. She said her pain was at a five, which is pretty high for her. I was thankful for her friend who is sweet, kind and accepting of Amaya. He's never once asked about her leg, wheelchair, anything. He just likes playing with her and thinks she's funny.
     I'm also very grateful for her teacher Ms.Gillespie, who not only helps Amaya learn, but helps take care of all her other needs as well. She's been so accommodating and flexible. I'm sure its not easy having someone come late or leave early from class three times a week. She sent a text last night after reading the blog. She asked if there was anything else she could do to help Amaya during the day with her knee pain and the turning in her knee (give her more room, etc.). I was touched that not only was she reading the blog, but she was thoughtful and considerate of Amaya's needs. Thank you Ms.Gillespie, your kindness means a great deal to us!
    Later that afternoon I got a text from Amaya's best friend's mom. She said his older sister asked if she could write a paper for school about Amaya. She has to write about someone who was overcome a difficult situation, came through it and inspires others. I was touched that she thought of Amaya for her paper. I'm glad that Amaya inspires others, as she does me. It touches my heart when people see the fire, strength, courage, resilience, and kindness in her. It certainly helps make up for all the negative comments, stares, etc. that we get.
    On the way to therapy this morning I played the Eye of the Tiger. We haven't listened to it for awhile and I wanted to motivate Amaya. And it worked! She made her goal between ninety-five and ninety-seven. At therapy she was focused, followed instructions, worked hard and did everything Melissa suggested, without complaints or whining at all. She walked into therapy and pushed Lidie in on the wheelchair (she knew she'd need it for after therapy).
Amaya started on this machine that she's never worked on before. She has her foot on a handle then pushed it back as she bent her knee.At first she did it with now weights on it, but said that was too easy so Melissa put fifteen pounds on it. She did that a few more times.  
Then she laid on it and did knee bends on it.I couldn't tell if she had weights on it or not. From there she walked into the kids gym. Lidie decided to push herself in the wheelchair. She asked me not to help at all so that she could do it alone. Several therapists smiled at her and cheered her on. It took her a few minutes to get to the gym, but she did it. She even turned the chair around corners well. I was impressed! She's been watching how Amaya does it and knew how to do it. 
After working on the ladder and doing some bends, lunges and stretches AmayaPossAbilities puts one on in April so I told her this could all be considered her training for that. We'll see what spring brings our way. 
     Back in the gym Melissa had her work on stepping over blocks. You can tell just how hard it is for her to lift her leg and bed it enough to clear the blocks. I asked Melissa what to expect after the fixator comes off in terms of walking. She said that its definitely a lot easier without the fixator, but Amaya will have to relearn how to step, work on her gait, and regain her range of motion in the knee. This will be the first time she has a stable hip and knee, a longer leg, no lift on her shoe, and no fixator. It's exciting to think about where she'll be in six months. If I know Amaya she'll definitely be exceeding goals. I also asked Melissa about the itchiness that Amaya has been feeling by her pin sites (Amaya has been scratching them and making them bleed). She said the itchiness is a sign of healing. The past week Amaya's gauze has been coming off so easily in the shower and her pin sites have been looking so well (no gunk, few scabs, and hardly any drainage). She said she wasn't sure if we could put anything on there to help because its so close to the actual pin sites. She suggested emailing Dr. Nelson for any advice. I probably will this weekend if it continues, I just hate to bother him. 
   When it came time for bends Amaya was focused and worked hard. She was able to get ninety-six degrees in less than two minutes! She was amazing! I worried that her knee would hurt later in the day but she said it didn't. In fact when I picked her up from school all she wanted to do was brag that she jumped on a jump rope at recess. I tried to be calm and proud, but secretly I was kind of freaking out. The chance of her falling or getting hurt is so high, but she said she did it with no problems. All I could do was smile and sigh. She said she had a great day, then later said that she fell at recess. She said she forgot to step with her heel first, tripped then fell to the floor. She said she didn't get hurt and didn't go get any pain medication. Thankfully she didn't hit her leg at all. It's funny but in one conversation with her I can feel nervous, scared, sad, happy, proud, relieved, stressed, grateful and many more emotions. All in a matter of minutes! She keeps me on my toes! 
   Thank you all for reading along and sharing the highs and lows of our journey.

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