amaya at lake

amaya at lake

Friday, November 2, 2012

Post-op after fixator removal

    Yesterday we had our post-op with Dr. Nelson. Its hard to believe its already been two weeks since Amaya's fixator was removed. She's finished her antibiotics, hasn't needed pain medication in a week and is slowly adjusting to walking. Over all she's doing very well.
    When we got to the appointment I went in and registered Amaya for her appointment. When I went to the office to register her for her x-ray I met a very nice woman from Santa Cruz, Ca. She had to update Amaya's account and resubmit copies of her insurance card, my ID, etc. It took longer than normal to process all the paperwork so the woman and I talked for a few minutes. We talked about Santa Cruz and how much we both miss it. What I wouldn't do to walk along the beach, explore the butterfly garden and enjoy the cool fall weather there with Josh and the girls. It's a favorite family spot, that we haven't visited in over a year. As the woman was talking she asked what Amaya had done and why. As I started to explain things to her she was surprised, shocked and amazed. I'm always surprised by other people's reactions. I forget that their outsiders and don't know what our reality has been for months and years now. They've never heard of PFFD much less a lengthening surgery. Its nice to see that reaction, the wonder and amazement. It helps remind me that not everyone shares my definition of reality and that I shouldn't take for granted just how amazing it all is! The fact that Amaya has gotten such amazing treatment and that her leg will never be the same. It really is something to celebrate!
     After x-rays we waited in the lobby for almost two hours to see Dr. Nelson. In the lobby Lidie played with two girls, colored on our paperwork, shared snacks with friends (new patients don't realize how long the appointments are and how antsy and hungry kids get), Amaya finished her book, and I got some reading done as well. While we waited a woman came over to ask how Amaya was doing. I recognized her, but couldn't quite place her. Then I realized it was because last time we saw her (a few months ago) she was still pregnant. One of her sons has PFFD. During the lengthening process Dr. Nelson introduced us to them so we could meet and share some of what's to come with them. Her son is doing well and adjusting to his shoe lift. He will need three lengthening surgeries throughout his life. His first will be next year. She was curious how Amaya did with her lengthening, how much new bone Amaya gained, and how she was doing now that her fixator was removed. She had many questions and we were happy to answer them all for her. She wondered if Amaya could walk now, was amazed by how much new bone Amaya gained, asked what Amaya's pin sites looked like now, how therapy went, at what age we started treatment, what is next for Amaya, etc. It was nice to run into that family, to see that their son is doing well and to help them a little bit. We think of them often and wish them well on their journey with PFFD.  It's so nice to meet other PFFD families and to share our experiences.
    Once we got back into a room the nurse took Amaya's temperature, and asked about pain, etc. Then a doctor came in to see us first. He went over Amaya's x-rays with us, and asked how she was doing. He mentioned that he didn't like how far out the rod stuck out from the top of Amaya's femur (I forgot to ask if something needed to be done to correct it. I emailed Dr. Nelson last night to see what he thought, but haven't heard back yet). After a few minutes the resident who helped the day that Amaya's fixator was removed came in. They had a new computer system they were using that day for the first time and things were taking a little bit longer. Then Dr. Nelson came in. He asked Amaya about her Halloween. She gave him his card and thanked him for her outfit. He asked how her pin sites and incision were doing. We said good, so he said he didn't need to look at them. We mentioned that her knee is popping occasionally. He said that was normal and could be caused by the scar tissue around the knee. He said it should get better with time. He asked if she was able to bend and straighten her knee. She showed him and he was happy with that. He asked if she was walking and how she was doing. We said she was walking more with the walker, but still hesitant to walk independently. He gave us a prescription for physical therapy. He wrote it for three times a week for six weeks. Dr. Nelson was happy with Amaya's progress. He said her bones looked good and were healing nicely. It was lots of great news. We won't go back to see him for two months from now.
    After the appointment we went over to the hospital cafeteria for lunch. Amaya requested a veggie corn dog and hospital pudding. As we ate Amaya kept looking around the cafeteria to spot out the female doctors. She was so happy to see so many there. Even at her age she's aware that their are more male than female doctors. She knows she'll have to work extra hard to be one of those few. We remind her that she can do it! She has the strength, resilience, determination and drive to do it!
     After lunch we went over to physical therapy to visit Melissa. As we walked in Amaya said, "I don't miss this place, just Melissa." I don't blame her, she's endured some very intense, painful therapy. I reminded her that when we return for therapy it should be easier than it had been during her lengthening. When we walked into the gym we looked around for Melissa but didn't see her at first. Jeremy came over first and said hello. He told Amaya that she looked about ten pounds lighter. That's about what her fixator feels like. Then Melissa ran over and  picked Amaya out of her wheelchair. She gave her a big hug and said how much she missed her. Lidie got excited to see Melissa and gave her a big hug. I gave Melissa the prescription from Dr. Nelson. She said that this will probably be the only one he writes for her. She told Amaya that it gets easier from this point on. She asked Amaya if she could show her how she walks so Amaya stood up and walked about ten steps toward her then back to her wheelchair. We told Melissa that Amaya is still doing her stretches, band work at home and walking with her walker. Melissa said to keep practicing and she'll continue to improve. It was nice to see Melissa and the other therapists. We'll be seeing them again soon.
   After visiting with Melissa we walked over to the playground on the back of physical therapy. The girls played for over half an hour. It was so nice to see Amaya ditch her wheelchair to get up and play. She was mobile; walking, hopping (sometimes she does that because its quicker than walking), climbing, sliding down the slide, swinging on the rods, and playing restaurant with Lidie. It was so nice to sit on a bench in the shade with Josh watching our girls play. Maybe I'm getting old and sentimental, but I get so much joy from those small moments. I realize how precious they are and that they don't come easy.
Amaya modeling her surgical gloves. She was so excited, she didn't take them off for hours! 
She made herself a business card out of one from the orthopedics office. She wore this on Halloween night to trick or treat. She had a great time!
In the waiting room holding the card she wrote Dr. Nelson. 
Here's the side view of the top of her femur. The first doctor said that her hip has healed so nicely.
Here's another look at that x-ray.
Here's a close up of the top of the femur. You can see the three holes from where the pins use to be and the rod in her femur. It kind of looks like a crochet hook.
Here's the front view of the femur. This is when the doctor noticed how far up the rod was. It's crazy, it looks like its sticking completely out of her femur. You can also see the pin holes here too.
     Here's the bottom of the femur. You can see where the three pins went through her bone and the healing that's gone on in two weeks. Both doctors said the bones were healing up really nicely. You can barely see the new bone growth that Amaya gained during her lengthening. Her bone is healing so well and her new bone is hardening so well that you can barely see the difference between the new bone and the original bone.  And you can also see how straight the femur is here. Before her lengthening her femur turned a bit here, but Dr. Nelson corrected that for her as well. Looking at these pictures and knowing that its my daughter's leg I'm looking at is quite overwhelming and emotional. I'm speechless. 
Amaya outside of physical therapy.
Amaya and Lidie playing on the playground. Amaya did so well on these swing-thingsp. that she didn't need us to spot her at all!
Looking across the playground I saw Amaya's wheelchair parked and her playing. It was such a great sight!
She got herself to the top of this wall by herself and Josh helped her down. 
She also climbed up and down the stairs, slid down the slide, stood, walked and played. 
     Here's a look at her middle scabs. The middle one has fallen off but the top and bottom one are still there. They're healing well. Her scabs continue to fall off on their own. When I showed this picture to the mom in the lobby she was so surprised. She said she pictured them looking like holes from a piercing, that go through the skin. She was relieved to see how well Amaya was healing and how her pin sites looked now. You can see an indentation in her skin. Its from the scar tissue. Melissa recommended massaging the skin to pull it loose from the scars and muscles. Its not very painful, but a bit uncomfortable. But Amaya has been doing it almost every day. 

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