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!   [...]

Today my unit at work celebrated kicking ass by going out to Old Chicago.  I brought Evy with me and my colleague Karen brought her hubs and son Jacob who just turned 1.  There were a bunch of people from work there but I didn’t take pictures of them like I probably should have.  Instead [...]

We didn’t have anything special in particular planned for today, but that’s how we roll around here.  In the morning, Evan got to wear his Handsome Devil shirt over to Nana and Papa’s: In the evening we got to chill out at home, watching his favorite show Peep and the Big, Wide World.  Wearing a [...]

February 7th marked the start of Congenital Heart Defect Awareness Week. To help raise awareness, Mott Children’s Hospital requested those with mended hearts to participate in a video slideshow. I’m proud to say that not only is Evan in the video, he is the coverboy! The picture below is part of the email that is [...]

It has been over a month since our last post so we have a little catching up to do. Evan is walking very well now, he’s all over the place and into everything. We’re still working on getting him to stand up on his own without holding onto something for support. It’s crazy how quickly [...]

Proud and happy does not even begin to cover the emotion that was felt in our house today as Evan took his first walk across the living room. Before today his only hands-free adventures lasted a few seconds and covered a foot or two. The video below is a series of 10 clips lasting about [...]

Evan is getting closer and closer to walking. We’re not in any hurry, he gets into enough trouble as it is already but alas, our little boy is growing up. Evan had taken 3 really good steps on his own during our PT appointment yesterday so I pulled out my phone and shot the following [...]

Happy Thanksgiving from all of us here!  We couldn’t be more thankful for all of the love and support we’ve received.  We are so thankful for Evan’s success in battling his health issues.  I don’t know how we got so lucky to have such an awesome 16 month old.  Yikes!  Where does the time go??? [...]

A co-worker had professional pictures taken of her newborn and had them in her office.  They would tease me with their adorableness every time I walked by.  I was very jealous.  Partly because we were never able to capture Evan like that when he was little and partly because now that we are home we [...]

I love to hear Evan laugh and this video is full of laughter. It always brings a smile to my face. Mommy the Pony from William Wood on Vimeo.

  I realized when I sat down to write this post that we have not written much about Evan and how he has been doing since we were in the hospital almost 6 weeks ago. Sorry about that. There have not been a lot of developments but the ones we have had are been pretty [...]

Today is Evan’s 1 year G-tube anniversary.  G-tubes are interesting things.  I hate the g-tube.  I love warmly like the g-tube.  It’s one of those necessary evil things.  He went from a scrawny, failure-to-thrive baby into a little boy who has to wear clothes made for children twice his age.  Well, except for pants (he’s [...]