March 23, 2025

Couple things I didn't say in the last post…

I was so busy getting the details out for family and friends that I didn’t get to adequately share our gratitude for Dr. Nelson. It’s amazing to have a surgeon who’s an email away at all times. I'm very well aware that the fact we heard back from him in less than twenty four hours isn’t the norm for others. It means so much to have him respond not only so quickly, but more importantly, with such kindness and compassion. 

Having our child undergo nine surgeries hasn’t been easy. It’s been an emotional rollercoaster full of highs, lows and the occasional low low. However, with each procedure we have been confident in Dr. Nelson’s ability and touched by his kindness. It means so much to trust in the person making decisions for your child. As parents we did our best, but there were so many times that we did not know what to do or when to do it. In these moments where we felt overwhelmed or simply didn't know the best decision to make, we leaned on his guidance and knowledge. We knew he had Amaya's best interest at heart. And that was enough. I'm so grateful to have him be a part of our lives for so long. We met him when Amaya had just turned five years old. We were so unsure of the next steps. He was the third pediatric orthopedic surgeon we had met. From the moment he entered the room we were in awe. There was an immediate difference. He was so knowledgeable on her condition and the best way to treat it. He gave us a treatment plan that would start with her first surgery three months later. He gave us an idea of what we would expect for her life and the many procedures she would need. And here we are nearly fifteen years later. About to undergo surgery number ten. And with the same confidence in our surgeon, gratitude for his skills, knowledge and kindness. His presence is such a calming guide as we head into our (hopefully) last procedure. 

Dr.  Nelson and Amaya back in 2012. 
We'll have to make sure to get an updated picture of the two of them 


Surgery Number Ten

Since Amaya‘s last surgery a lot has happened; she’s graduated high school and started college in Pittsburgh, PA. It’s hard to believe we have a nineteen and sixteen year-old in our family but here we are. Each phase of parenting is so different. As they grow they're both becoming more of their own person; each so different and unique and fill in our family with love. Its amazing to look back. We met Dr. Nelson just as Amaya turned five and Elle (Lidie) was two. 

It’s been almost two years since Amaya’s last surgery. During which her Precise lengthening rod was replaced with an intramedullary rod. At the time Dr. Nelson let us know it could stay there or be removed if it was causing discomfort. Amaya had mentioned discomfort during her junior year but opted to not have any surgeries heading into or during her senior year. With the busyness of senior year, graduation and moving out to Pittsburgh the time has gone by quickly. Amaya has continued to mention discomfort but recently has said that it has been harder to deal with. She says the majority of the discomfort is in the areas where the screws are, both near the hip and the knee. She also said the discomfort is primarily when her knee is bent, when her legs are crossed, but also after sitting for long periods of time, after excessive walking, and when she walks on uneven ground.  

This surgery should be pretty straightforward and quick. Dr. Nelson said that any orthopedic near us could do it. Amaya really wanted Dr. Nelson to do it. I think for many reasons; she really trust him, she feels comfortable there as she knows what to expect, he knows her and her leg so well. And if this is to be her last surgery it’s a bit ceremonial to have all ten done with him. We reached out to him last week to see what his availability is for summer. He put the order in quickly and we were in touch with his scheduler two days later. It happened so quickly and in a matter of days we got her surgery scheduled for June 20th. 

We still need to work out the details to figure out but have some time to do that. In the time that we reached out to Dr. Nelson to the time we had the surgery scheduled was pretty quick, just a matter of days, which is great. In those few days I thought and felt so much, as I'm sure Amaya did too. I’m so grateful for Dr. Nelson and his warmth, glad to have it scheduled with some plan in place for Amaya, and it’s exciting. I'm also worried about the logistics and making sure that everyone is taken care of. I'm also hating that Amaya is having discomfort and pain, grateful that there’s something that can lighten a little bit of that. And remembering the past surgeries and procedures and knowing this is the path our family has been on. At times its been challenging; for each of us in our own ways and as a family as well. 

I know for Amaya she was nervous and stressed. Before we heard back from Dr. Nelson and the surgery was scheduled she was nervous about having the surgery and worried that Dr. Nelson wouldn't be able to do it. She worried she would have to get it done by someone else somewhere new. Once we got it scheduled with him there was a sense of relief. Then the reality of a surgery kind of pops in her (our) mind.  

As for the surgery, were assuming it will be outpatient. The last time she had hardware removed it was outpatient. Compared to some of her previous ones this is one of the more "minor" ones. She will have four incisions, the one on the knee being the biggest. 

Thank you for your love and care for us on this journey. 

Amaya making friends with a Lemur in SC when she visited a friend. 




Couple things I didn't say in the last post…

I was so busy getting the details out for family and friends that I didn’t get to adequately share our gratitude for Dr. Nelson. It’s amazin...