It's been three months since CNY Central took you inside the Friedel family home in Weedsport to see what it's like to care for a child with a rare and incurable skin disease called Epidermolysis bullosa (EB for short).
Easton Friedel has spent most of that time hospitalized in grave condition. He was rushed to Golisano Children's Hospital in Syracuse on March 10th. He could not breathe and doctors say his condition was worse than pneumonia.
"More than once, we talked about how the hole we were in seemed insurmountable," Dr. Kevin Ragosta said.
Easton's team of doctors decided that a tracheotomy would be the best course of action - a tube implanted in his neck to attach to a ventilator and pump air deep into his lungs, giving him the support he needed to stop building up carbon dioxide. The gas building up in Easton's body was threatening his brain development and lowering his heart rate to a place where his heart could stop.
The treatment worked, and now Easton is on the road to leaving the hospital, as soon as he is cleared for 20 hours a day of nursing care.
Easton's crisis involving his lungs is a problem independent of his skin disease, but the two health issues came together to nearly kill him.
One night, Easton's mother Danielle says the doctors and nurses asked if she and her husband, Easton's father Jared, wanted them to restart Easton's heart. His heart rate had dropped to a nearly deadly level. That night the couple had one of several conversations about whether Easton would be better off if the machines that were keeping him alive were allowed to stop.
"We had some very emotional conversations about that," Danielle told CNY Central's Michael Benny. "What would his quality of life be like, would he be able to overcome all of this? And then, all of a sudden that night, his heart rate came back and he's been doing great ever since. It really tells us that we made the right decision to stand by him and believe that he can pull through everything."
Easton still has more battles ahead. EB is a painful disease that causes blistering of the skin. Easton was born without the special protein that binds the layers of skin together - so the slightest touch can cause skin to come off or peel or blister. Infections can be life-threatening. Easton's family is confident that he will make it, though.
"He's a fighter, a strong little boy, and I can't wait to see him when he is grown up a little bit more, to see what kind of little kid he's going to become. He's going to be a tough one!" his mother said with a beaming smile.