Ethan underwent the second part of his feeding tube surgery today. The doctor replaced the long tube (called a PEG tube) with a button. While we are very sad that Ethan is now completely dependent on his feeding tube (sometimes he will take a few bites of purees, but not often) we are very thankful that we have a way to provide our little boy the fluids, nutrition, and medicines/supplements his body needs in order for him to stay healthy and continue to grow and develop in his own time and way. We are very glad to be rid of the long tube and to have the button. As always we had wonderful care from all the doctors and nurses who took care of Ethan. We had great nurses and were excited to see some familar faces and that several people remembered us and our sweet boy. A big thanks to a very special nurse/friend/fellow believer, Anne. We feel blessed that God placed you in lives.
Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.