So Evan picked last night of all nights to decide that he was a big boy and move from laying down to sitting up in his crib. He’s been able to those things for a while but he’s never really done it at night time in his crib…last night he did it over and over […]

Dr. Bradley, the electrophysiologist came to talk to us this morning. We thought he was going to tell us that we were free to go home and that the pacemaker was stable enough to last until the spring when Evan is already scheduled to have his next surgery. To the contrary, Dr. Bradley informed us […]

I can say that Saturday and so far Sunday have been a huge improvement over Friday.  Friday night was just ghoulish.  It was an insight into how terrible coming back for the Fontan next summer will be with a toddler in tow.  Saturday into Sunday was a much better night of sleep for everyone and […]

Some things change and some things remain the same… today something remains the same from last year to today… We’re in the hospital again. 😥 Each month we send a pacemaker transmission to the University of Michigan for their review. This transmission contains all kinds of data about how the pacemaker is acting. Typically, within […]

July 28, 2011 was the most terrifying day of my life.  That was the day we handed over our 1 week old baby to have his first and most complicated open heart surgery.  It posed the most risks and his anatomy was just so small and it was unknown how his body would react to […]

  A year ago today at 5:39AM Evan was born. The journey of a ‘heart kid’ was described to me once as a roller coaster, and this year has been just that. Birth, open heart surgery, pacemaker, strokes/seizures, G-tube, second open heart surgery, chylothorax, bacterial infection in chest, feeding issues, developmental delay… the list continues to […]

Here are a bunch of pictures over the past month starting with Father’s Day and ending sometime mid-July.  During this time Evan discovered hoses and loves to play with them when it is so hot out.  But he hates it when the hoses play back and spray him.  Go figure. We also had some very […]

This day last year we drove to Ann Arbor to begin waiting out for Evan’s arrival (it was his due date) and had no clue if we would return home as two or three.  Today we drove to Ann Arbor for follow-up development and neurology appointments.  What an evolution of a year.  Can’t imagine having one […]

How some things change… and some things stay the same??      

Here’s a 3 minute video of Evan dancing to a few different things.