amaya at lake

amaya at lake

Thursday, November 15, 2012

Four weeks since the fixator was removed

    It's been four weeks since Amaya had her fixator removed. We are adjusting to "normal" life and realizing that life after a fixator isn't the "normal" we're use to. Life with a fixator wasn't normal by any means, but we adjusted and did fine. And now we're adjusting to a new normal and making it work. Here's some updates:
     Amaya's scabs have all fallen off and her scars are healing nicely. The scabs all fell of on their own at about week two or three. They didn't hurt at all, most times she wouldn't notice until they were gone. She's massaging her scars to help release the scar tissue. Dr. Nelson and Melissa (her therapist) had suggested we do that to help release the muscles.
     Amaya's pain has pretty much disappeared. She hasn't needed any pain medication or hot pads for over two weeks. Occasionally her knee is stiff, but it passes after a minute or two. We massage it and stretch it and that seems to take care of that. Amaya's knee is still popping, but not that often and it doesn't seem to bother her very much (she said the pops get up to a two or three on the pain scale). It seems to be lessing in frequency, which is nice.
     Amaya has been sleeping through the night, and in her own bed for two weeks now. This has been such a nice treat for us all. Having her fall asleep within minutes has been such a relief. Her sleeping through the night allows me to catch up on sleep. And when we're well rested we do much better.
      Amaya has been off-track from school for three weeks now and has had plenty of time to rest and recuperate. She'll be returning to school in a week and is very excited to go back.
     Amaya's appetite has increased and she's eating almost twice as much as she did with her fixator on. She had lost about seven pounds when she had it on.
     Amaya is using her walker to help her walk around the house and when we go out. She uses her wheelchair for long walks (like malls, stores, etc.). We use to put the foot rests on to give her extra support and to protect her feet from being bumped, but now we've removed them completely. Amaya is finding ways to move around (shuffling around, scooting on her bottom or holding onto things). She's been getting a bit frustrated that she isn't able to walk or run easily or independently. She also isn't able to bend her leg fully, but extending it straight has gotten easy. We are still doing our stretches and physical therapy homework. It's neat to see her move around, but a bit sad because I know how badly she wants to walk.
    After spending a couple hours on the phone yesterday (plus the calls I made last weeks) and much help from some referral coordinators I finally got Amaya an appointment with her physical therapist. Unfortunately we still need to wait another week and a half for our appointment. The appointment will be an evaluation to see where Amaya is at and to make a treatment plan. Then after that we will schedule the rest of her appointments. Amaya is excited to be going back and ready to work hard! She is very motivated and determined.
    Amaya and Lidie often mention their shock, amazement, confusion about the whole situation. They often ask questions or say things to help them process and make sense of things. Amaya has said things like, "I can't believe I had hardware."  "Do others do eight cm?" Lidie asks, "Hey remember when Amaya had her fixator?" "Why don't we go to therapy?" They talk about the surgeries, the fixator, therapy, etc. in normal conversation throughout the day. Amaya is most frustrated by her progress in walking. If you read my post yesterday you'll understand. But, now that we have the therapy appointments she's optimistic and hopeful. She didn't want to talk about anything yesterday and wanted some space. At bedtime I explained what the rush rod is, how it works (its there to support her femur and help prevent any breaks or fractures) and why she's having a hard time with walking (tight muscles and re-learning to walk). She was sad and frustrated, which is always hard for me to see. But, she's only seven and has shown a great deal of maturity and has dealt with things as best as she can. I'm hopeful and optimistic because her strength, resilience and drive will help her continue to heal and recover.
    I sent Dr. Nelson a picture of Amaya's femur and had a question about the rush rod. Toward the top it looked like the rush rod is sticking out of the femur. Dr. Nelson emailed me back. Here's his reply, "The rod is the ideal length making it less traumatic for removal. It is actually well placed down into cartilage that you do not see on x-ray. Frequently we even leave them slightly more proud than that." I was grateful that he replied to my email. His message informed me and calmed my nerves. There's so much we don't know. His patience and information have helped us so much. Amaya still doesn't understand why the rush rod has to stay in for several years. She thinks its part of the reason she isn't walking, but as far as I understand that isn't true.  She asked, "If its a rush rod, why don't they rush to take it out?" She's not sure why it would stay for years. I'm sure its hard to process for a seven year old.
Here's my determined girl! She pulled her four foot tall bear off her bed, down the hall and up the stairs all by herself! This is Freddy Weddy, a bear she won at the chiropractor's office.
Here's what Amaya's heal looks like. Remember she had a bed sore there. Its still there a little bit. She said it hurts when you push on it, and when she steps on her heel first. Maybe that's keeping her from walking as well. 
Sisterly love; Lidie was spotting Amaya up the stairs. Its sweet to see Lidie help take care of Amaya.
Here's the picture I sent to Dr. Nelson. Doesn't it look like the rod is sticking out of the femur?
Here are her pins at her hip. These look so long. 
Here's her pins above the knee.
Here's what her shin looks like. 
Here are her pin sites during the day, they don't seem to look as red then.
Here's Amaya before bed doing some of her stretches. We use that blue band to help her straighten and bend her knee.

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