Celebrating this guy is always a highlight of our year. He is loved by so many amazing people. His sisters made sure to make the weekend extra special. 🧡💚

We will head back to Milwaukee at the end of the month for a transplant appointment with his incredible team. Max has now been listed for almost 1.5 years. This is longer than what we initially expected. This process of getting a heart is complicated. He’s been doing okay at home but we can definitely start to notice changes in energy level. We started the conversation with his medical team of admitting Max in the next 3-6 months if he doesn’t get his call before that. This admission would increase his listing status and hopefully get him a heart sooner. We would ideally like to keep Max home until he gets a call to avoid a long hospitalization. However, we understand the decline in health will only continue to get worse. 

We did want to bring to light that the transplant is not a fix all. I know most people believe that Max receiving this beautiful gift will ensure health and longevity and unfortunately this is not a fix but a palliative solution. We are hoping this new heart will help Max with his lymphatic issue and give him better quality of life overall. However, transplant introduces a new set of problems such as rejection. Rejection and function decline are common with these sort of transplants and Max will need an additional transplant every 5-15 years even if all goes well with this heart. ♥️ 

Research in the heart community has been doing some pretty incredible things. We continue to talk with his heart team about any new surgical treatments that may help Max without transplant. The transparency of the team at Milwaukee has been amazing. They continue to work with other institutions and have doctors all over the world that fight so hard to ensure the best for each one of these kiddos. ♥️

We appreciate all of the support and love that Max receives from his community, family, and friends. He fights hard everyday to maintain some normalcy and we appreciate all of you that help him attain this. 🥰❤️