Has it really been since we just got home from surgery since we last posted?  Well, that’s embarrassing.  I guess you can expect to have lots of photos in this update.  We’ve had some pretty rad developments since then. First, and most importantly, we had a follow-up appointment with the cardiologist and she said everything […]

Evan did so well with surgery that we were released on Wednesday morning!  I am so proud of him and how he has handled himself with everything that he has been through.  He still has a smile on his face and is still a sweet little boy.  He has absolutely the best  personality, disposition, spirit, outlook…. whatever […]

Here are a bunch of photos to bring everyone up to speed with how things look.  Today Evan is doing well.  He isn’t smiling a ton but he doesn’t appear to be in pain – just kind of tired and chill and doesn’t mind vegging out.  Yesterday Evan got a PEG tube placed, which has […]

Thanks to our generous friends Jason and Melissa Oman, we were able to all get a comfortable night’s rest the day before Evan’s 8th surgery.  Their children, Erik and Kennedy, provided much-needed entertainment the night before and were great with Evan.  It’s like Kennedy is a natural big sister.  🙂 I don’t think you have […]

The number of surgeries doesn’t make it any easier… 8th time handing Evan over for surgery. Expected 3 hours in the OR. He went back at 12:30

It has been over a month since our last post and it’s been a blur. Sarah and I both got different jobs and although Sarah’s hasn’t officially started, she’s doing the work for both jobs. My new job requires some travel, lots of early morning teleconferences, and even more late nights on the computer. They […]

Since figuring out Evan is allergic to cow’s milk and switching his formula, he has done remarkably well.  He hasn’t had any issues with puking and his oral motor skills have improved greatly in just a month.  He has even been asking for food and seems incredibly interested.  This past week was a bit of […]

  If you have been following along with Evan’s journey then you should know that, in addition to everything else, Evan has been battling GERD and puking his entire life. His puking has gotten so bad that we’re concerned about his teeth, which, at only 20 months old are browned from all of the acid […]

  A couple weeks ago I read something that really caught me off guard. I didn’t believe  it, I didn’t want to believe it, I couldn’t believe it. A person “is eligible for two heart (transplants) in a lifetime.” The words stuck in my mind as I began to understand the ramifications that this could […]

Since explaining the past month+ in words would be way too boring, I decided to do an update in pictures.  Many of the photos have captions so the details should be filled in.  Instead of having one giant gallery, I separated out the larger photo sessions from the “everything else” gallery.  Enjoy looking around!   […]