1 Month Later

Tomorrow Wynnie will have his 1 month anniversary here at the ICU. Not quite an anniversary worth celebrating at first glance but it's been a very sobering month for our family. We've seen our family and friends come together in prayer... Even strangers have added Wynn to their prayers through bible study groups and circles of faith our friends are in. We've seen the strong love and bond that Wynnie shares with his very vocal and highly inquisitive twin brother Dori ("Ninny!! Ninny!"). We've seen maturity in Ben and Alex (never complaining about why Chris and I are frequently gone to spend time at the hospital and they know when I'm emotional and need a hug). Most importantly we've seen what a fighter Christopher Wynn Johnson is!! His determination to come back home is evident on his persistence to get better, no matter what is thrown in his way.

Most people will see their kids grow up to become successful student athletes, caring community leaders, cure-finding doctors or rocket cruising astronauts. But at the small cute age of 4, Wynnie has given us glimpse of his life's purpose. He has brought us together and has endeared himself to everyone at Childrens that has come into contact with him. He has reminded us how precious and unpredictable life can be. He has shown us how scary the reality of his I-cell disease inevitability is.

But Wynnie is like that guy at the party whose friends are looking at the chairs being put away and they are saying "we better leave". Wynnie is having too much fun and knows this party is just getting started. I think he has successfully managed to throw the keys into the bushes and wants to keep on dancing!!

Since Friday's extubation he has been managing to breathe fairly well on the bi-pap machine. He looks like the cutest Darth Vader ever. Twice yesterday and once today he has been breathing well on the vaportherm cannula (o2 support through only his nostrils). That'll be the next goal for him to be able to go longer stretches of time on the cannula while his lungs continue to build up strength and heal.