amaya at lake

amaya at lake

Wednesday, April 24, 2013

Six months after fixator was removed

     Wednesday we celebrated the six month mark since Amaya's fixator was removed last October. Six months ago I had no idea what our lives would be like today. Nor did I know what Amaya would be doing, or what her pin sites would look like. I worried, wondered, and tried to research. Just like all aspects of life with PFFD or with a fixator we just take it as it comes. There is no what to expect manual. Although, sometimes I desperately wish there was. 
    I'm happy to report that six months later we are doing great! Amaya stopped physical therapy one month ago, but continues to do her daily therapy homework. Melissa gave us some stretches to work on to continue to strengthen her butt muscle that had suffered some atrophy while she had her fixator on. Amaya continues to have a great attitude about her therapy homework. She does it daily without grumbling or complaining. A couple of weeks ago Amaya received a card from Melissa. That just shows you what an amazing therapist she is! It was a big surprise for Amaya and made her so happy to receive it.
    Amaya has been going to school regularly and hasn't missed a day of school (or left early or arrived late) in almost a month! This is the first time in three years that she hasn't missed school because of a surgery or therapy. And she's liking it a lot!
     Lidie and I are enjoying our "free time" now that we don't take Amaya to therapy on a regular basis. It was a three hour long process for us each time. With the extra time Lidie and I are able to attend her weekly dance class, and bi-weekly play group. Lidie is enjoying the free time to just be a kid before she starts school in the Fall. With the extra time we've also had a decrease in our stress level and an increase in our sleep. It's been nice. Really nice.
     When I did our taxes a few weeks ago I added up our medical costs and mileage for the past year. This is what I found. We spent about $150 on gauze, bandages, tape and soap, $1,620 in co-pays, $375 on medication, $12 on disabled parking placards. And drove about 10,000 miles to and from therapy and appointments. And payed an average of $4 per gallon for each of those miles. Thankfully, we have good medical insurance. Next year we'll be getting a new insurance company so I'm not sure how that will work for upcoming referrals, appointments, shoe lifts, surgeries and therapy.
     Currently we are in the process of waiting for a referral to see Dr. Nelson in July. That would be six months since the last time we saw him. At that appointment he'll take new x-rays of her legs, measure her current leg lengths and predict her future discrepancy and let us know his plan for her. I've been working on the referral for two weeks now, so hopefully we get some answers soon. Because he's usually booked up a few months in advance. 
I just had to post this picture of Amaya. I saw her sitting and noticed that both her legs were bent. Look at how much the left one is bent! That was without any effort at all. And look at that smile! Six months later, she's a happy, healthy, thriving seven year old. I couldn't be any happier with her recovery. 
This is what Amaya's bedsore looks like now. Its gotten smaller, but isn't completely gone yet. Its pretty hard to see in the picture, because the color has gotten back to that of her normal skin. We are still taping it each day and applying lotion at night. At night Amaya wears the foam boot to keep pressure off of it. We have a follow up with the wound doctor in two weeks to see what he thinks of it and to see what he wants to do next. 
This is what Amaya's bottom pins look like. They don't bother her, but when she gets bumped or hit there she said its hurts more than other parts of her leg. Last week she hit her shin and one of her pin sites got a bump in it. She cried and said the pain was at a five. The bump stayed there for a couple days, then went away.  
Here are her middle pins, just above her knee. They dimple in a little bit, I'm guessing because of the scar tissue. I still remind Amaya to rub them hard to help loosen the scar tissue from her muscles. 
Here are her top pin sites. These are the biggest scars and have the deepest dimples, especially when she moves. But they don't hurt her or bother her.
    Amaya is still attending her weekly gymnastics class. She really enjoys it! Here's Amaya working on the rings at gymnastics class. Her teacher says she has a lot of strength, especially in her upper body. Its a great way to work on stretches and building strength while having fun. A lot of the exercises they do in class are similar to the ones we do for therapy homework so its helping her stretch and build strength. I talked with her gymnastics teacher today and she mentioned that she has seen an improvement in Amaya in the month she's been attending. I told her about Amaya's lengthening and her PFFD. She was amazed with how well Amaya is doing. 
Here she is walking on the balance beams. She's got really good balance.
Doing some therapy before bed. 
Amaya always has a smile for me, even during therapy.
    And in less than a week Amaya will be participating in her first triathlon. She will be running a 1/4 mile, biking a 1/4 mile and swimming 25 yards. That's pretty amazing when I think about where she was a year ago. She's excited to be participating and has been working at bike riding and can almost do it without her training wheels. 
     Thanks again for all your help, love and support. Amaya is doing great! We all are. Its amazing how much healing and recovery she's had in six months! And how quickly we've adjusted to life without a fixator. We've moved on and life has gone back to normal. The girls still talk about therapy and how much they miss Melissa.
    Although Amaya has the scars to prove that she had a fixator you wouldn't know it by looking at her. You can't tell in her smile, her walk, her run, how she jumps rope or rides a bike. Like William Shakespeare wrote, "And though she be but little, she is fierce."

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