Two days ago I really did not think Ezra was going to make it. His breathing was incredibly labored and he had this awful pin prick rash covering his entire body- head to toe. The beautiful smile had disappeared and he seemed incredibly uncomfortable in his own skin. Ezra’s lungs sounded “crackley” and a chest x ray showed some sort of bilateral infection or “splotchiness”.

Today, Ezra is smiling. His eyes are bright and beautiful and we are seeing him rebound from whatever illness took over his body. His symptoms are so much better. However, a couple times a day, he has been throwing up… which is concerning. It is important that Ezra get the nutrients he needs as he is already in the 1% for weight. We are so thankful we did the g-tube surgery when we did because there were 2 or 3 days when Ezra did not want to nurse at all. What would we have done?

I have been talking with a wonderful mom who has lost her son to this disease. She mentioned that there were a few times when she was sure her son was going to die, but he managed to come back. It’s amazing what fighters these kids are! I think this experience was a reality check for us about how vulnerable Ezra is to infection. We are meeting with Hospice this week to learn more about their programs. We are keeping our focus on our goals of making sure Ezra is as comfortable as he can be, and of enjoying Ezra for as long as we have him.

I am so thankful for all the extra prayers and thoughts for Ezra during those challenging days. I am also happy that my sister is here visiting. She brings with her a whole lot of love and fresh energy.

Wishing all of you a very happy, peaceful holiday.