Basketball and Skateboarding

It’s hard to believe that it’s been six months since we got Amaya's last x-rays. Sure enough, it has. In that time Amaya finished her junior year, continued to heal, weaned off pain meds, she's able to walk with minimal pain, she can bend and extend her knee fully (and with no pain). She's been doing really well, so we were anxious and excited to see the new x-rays. We immediately saw a huge difference. I can't explain the amount of joy I felt and the feeling of relief that washed over me. Dr. Nelson was also happy with the x-rays (that only increased our joy and relief!). He said he could remove the rod (as early as July). He also said she could remove it later in life or opt to keep it in. He said its not obligatory to remove it since there were no long term effects to leaving it in. He said its up to individual's preference. So we left it to Amaya to decide.

Amaya had mentioned having some discomfort at one of the screw sites so I figured she would want to get the rod out as soon as possible. She thought it over and decided that she doesn’t want to take it out just yet. The discomfort is minimal and she’d rather have no surgeries heading into her senior year and all of senior year. A whole school year without surgery! She said she wants to leave it there and have a “normal year and get back to playing basketball and skateboarding." She hasn’t been able to do those for several years and she’s really looking forward to getting back to them.

So for now the plan is she gets to be a kid, while she still can, she'll be eighteen in September! She said she'll revisit the idea of rod removal next summer. At that time she'll decide if it's something she'd like to do and if so, when. She may decide to get it removed before moving off to college, decide to just leave it there until it becomes problematic or leave it there permanently. I think we are all looking forward to some “normalcy." To not have to think about the next surgery, prepping for it, the surgery itself and then recovery. 

I can't believe we are at this point; nine surgeries later, two feet on the ground, a stable hip and knee, no pain, no complications. It's amazing! We're so grateful for all that Dr. Nelson has done for Amaya. We met him just before she turned five and here we are a couple months away of her becoming an adult. I’m so happy and grateful she’s doing well. Way back when we had no idea what this journey would be like. I remember googling PFFD when Amaya was just a baby and feeling scared, overwhelmed and lost. We knew little of PFFD and less of the treatment options. We worried what her life would be like, and how we would all manage. It's been wonderful; Amaya has amazed us with her strength, resilience and wisdom. At times its been painful and challenging but we've leaned on one another for strength. We've been lucky to have met and become friends with other PFFD families along the way. Their guidance and empathy has helped tremendously. Our family and friends have shown up for us in ways we didn't even know we needed. We are so fortunate to have an amazing and kind surgeon in charge or Amaya's care. He has treated her with care, kindness and respect. We couldn't have asked for better. Thank you all. We are incredibly grateful. 

Here we all are at Lidie's 8th grade promotion earlier this month. 

Strange to think that a year from now we'll be at Amaya's high school graduation.

Here's the two views of her x-rays. 

Look at that bone! 

on the bottom one you can see the small screw; that's were Amaya feels minimal discomfort 

(usually when she pushes on her thigh).