1 year ago today, Parker underwent open heart surgery for a Potts shunt. It is so hard to believe that a whole year has passed. We are definitely glad that we are here and not there--that was a very difficult, scary and overwhelming experience. His recovery and the progress he has made in the 365 days since the surgery is nothing short of a miracle! We are grateful every day that he is doing so well.

Shortly after the last post in February, he had the broviac catheter removed and was finally truly free of the pump and line that had been part of his life for nearly 14 years. Literally overnight his life changed--no more covering the site in the shower, no more dressing changes, no more worries about line infections. All of the sudden there was a lot less to worry about!! It was kind of a weird feeling for us.

Parker has continued to do great on the new medicine, Uptravi, with minimal side effects. He has been on Uptravi for 6 months now and we  have noticed improvement in his energy and a greater ability to do some things that were hard before the Potts shunt. His echocardiograms have all been stable and his BNP continues to be very low. We always hope for improvement, but having his condition continue to be stable without having a permanent IV is a win in our book! His quality of life has improved so much and he now has the freedom to do things that he was never able to do before. Last month, he went to camp for the first time in his life.  He slept in a tent, hiked, fished, zip-lined and did a very challenging ropes course. He still had to manage all of his oral medications morning and evening and use oxygen at night, but he did great with it and really enjoyed the experience. He also has finally learned how to swim! Jason has spent the last 2 weeks teaching both Parker and Spencer how to swim. Our neighbors graciously offered their pool for the task which was incredibly nice. Both boys have made a lot of progress in a short amount of time. It is so fun to watch Parker enjoying the water! He also finished middle school last month and will move on to high school at the end of August (How is that possible?!?), he just finished taking Driver's Ed (Yikes!) and he will be playing in the drumline in marching band. We hope and pray that he continues to feel good and we are so grateful that he is living his best life and doing so well!!

As we reflect on this 1 year milestone, the same thoughts keep coming. Did we make the right choice to have the surgery? Was it worth it? We believe the answer to both questions is a resounding "Yes!". Although we'll never know exactly what would have happened if we had decided to wait or chosen not to do the surgery, we feel extreme gratitude to Heavenly Father for providing an insightful, caring team of doctors and for guiding us in the right direction at the right time to benefit Parker in the best way.