August 10, 2012

A good memory?

    This morning I followed up with Amaya about the photos from yesterday. I asked if she wanted me to delete them from the iPad so that she didn't have to see them, since they bothered her. She said, "no, because when I'm a teenager I might think its a good memory." I can't imagine her looking back on this as a good time or good memory, but definitely a good outcome. I told her that she'll always be able to look back and remember all that she's done and been through. She has much to be proud of! The strength, tenacity, determination, calmness and courage that she's shown will always be there for her to use in life. She has a great spirit and I'm proud to be her mom.
     On the drive to therapy Lidie asked Amaya, "do you love Dr. Nelson?" Amaya replied, "yeah, he's my doctor. And he's helping me get through all this." Lidie added, "And he's going to take off your fixator." Amaya smiled and said, "yeah." I thought that was pretty sweet and I was glad to overhear the conversation. I'm glad that after her surgeries and and all she's been through Amaya realizes that Dr. Nelson is helping her and isn't afraid or nervous when we see him. Truth be told, we all think he's pretty amazing. We're so grateful for all his help and all he's done for Amaya.
    When we got to therapy Amaya decided to walk in and push Lidie in the wheelchair. When we checked in the receptionist, who we know asked how Amaya was doing. I told her she was doing good an started school this week. She said that she sees Amaya riding her bike and working in the adult gym sometimes. She said that Amaya looks good and that its nice to see her walking around. I'm so grateful for such a kind staff who often ask about Amaya and compliment her on how well she's doing. 
Josh took this picture of Amaya last night. Since I was gone she decided to put her gauze on all by herself. Josh said he stepped out of the room to get Lidie's PJ's and when he came back Amaya had already started. He said she was so focused and looked like she was is "doctor mode." She did a good job too!
She showed this to me this morning. It's the list she started of things to do when the fixator comes off (she'll have a few weeks where she can't put any weight on her leg). It says, "go to museum with Diane, rent movies at Redbox, relax at home." Not a bad start, eh?
     Today Melissa had Amaya start on the total gym machine. She said that since her knee was so stiff on Wednesday she wanted her to start there. When she was working on there I told her that Ms.Cajiuat and her both wear the kinesio tape and that Ms.Cajiuat said to tell Amaya that they both "rock" because they wear the same stuff that the Olympians wear. Amaya thought that was pretty cool. Melissa told Amaya that she was like an Olympian, but Amaya said that no Melissa was since she works everyday. After that she walked into the peds gym then rode the bi-scooter down the hall and back twice.
Then Melissa had Amaya sit on that step stool so that her knee would bend. After each time Amaya got to shoot the basketball to try to make a basket. She made pretty much each one!
     Amaya did some lunges and threw bean bag animals each time she lunged forward. All those things that Melissa has Amaya do after a bend or lunge or sitting is a great distraction and reward for Amaya. We're so fortunate to have Melissa as Amaya's primary therapist. Melissa shared with us that she started working with a six year old boy who has two fixators on his hip. She said that he's had them on for a few weeks but Dr. Nelson wasn't happy with the therapy he was receiving at another place so he had him come see Melissa. I'm so glad we haven't had any issues with therapy like that. It's nice that Dr. Nelson and Melissa work so closely together to provide Amaya such excellent care. 
Then Amaya climbed up and down the ladder five times. It seemed like she did a lot today. Some days they do so much in those forty five minutes!
Here's video of the girls riding up the hill. You can see them working hard to get up. 
Here's some video of them going down the hill on their bikes. Amaya asked to do it this second time so that she could use the momentum to keep pedaling back to the gym.
      Melissa did some last minute stretches on her knee before starting bends. Amaya's knee was at fifty degrees but got to sixty easily. She made a goal of ninety-five. We agreed that if she hit ninety five she could rent a movie from Redbox tonight. Then she started her bends. In eight bends she was able to get to eighty-four degrees!  It took a lot of effort to get to ninety. She was in pain so when she hit ninety she stood up a bit and wanted to give up. We encouraged her to keep going and not give up. Its always hard knowing how much to push her and when to let her stop. She started bending again but had lost some degrees and was back in the eighties. She worked to get back to ninety then with a last effort she was able to get ninety-five! She was quite happy, although in some pain. 
     When I took her to school I reminded her that her knee might hurt more since she had therapy before school and to get Tylenol if she needed it. I've scheduled her therapies either early in the morning or in the afternoon so she isn't missing a lot of school. She rode in on her wheelchair since she was tired from therapy but parked it in her classroom and walked in and joined her class on the rug. She had a good day without any pain. I'm very thankful for all the effort her teacher Ms.Gillespie has put in to make sure Amaya has had such a good week at school.
   When she got home she asked me to listen to a crunching sound. She thought it was coming from her fixator. I couldn't hear anything but she said she felt it in her knee. I'm assuming its the same thing we had heard before and that Dr. Nelson said was "normal" for Amaya. But, we'll ask about it on Monday. 
    Tonight she had some bleeding form her top pins. The gauze was stuck and hurt a lot to come off. It ended up ripping a piece of her skin off with the scab and gauze. There's a picture down below. It's kind of yucky so if you don't wanna see it, don't look down. Her middle pins had a lot of drainage and took a few minutes to come off as well. She started to freak out a bit in bed when she saw more blood coming out of her pin. They haven't done that before, so I'm not sure what to make of it. another thing to ask Dr. Nelson on Monday. I cleaned it up and wrapped it up in new gauze quickly. I used twice as much gauze on that pin than normal to give it some extra cushion. Hopefully that doesn't give her any discomfort over night.  
Here are her top pins before I cleaned them and put new gauze on. 

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