Helping Families Minimize Chaos and Maximize Joy
Seven years ago Chuck and I handed our curly-haired two-year-old over to a cardiothoracic surgeon we had just met days previously, entrusting him with our son’s life. We had flown all the way from Washington to Texas with one-way tickets. When we left Washington we had no idea what was going to happen. We knew…
G-Tube Graduation Photo Shoot We are quickly coming up on the one year anniversary of Apollo’s g-tube graduation. The anniversary of the day he had his g-tube surgically removed. When Apollo had his g-tube placed in May of 2012 we were told me might always need it. We were told there was no way to…
Five Year Anniversary {Double Aortic Arch Repair} Five years ago today, Apollo had his double aortic arch repair repaired (yes, you read that right) at Texas Children’s Hospital. The week before Chuck and I left ten children behind in Washington and boarded a plane (along with Tilly and Apollo) with one-way tickets to Houston, Texas….
I am angry. I am angry at my son’s doctors, and I won’t apologize for that. I have posted this image of Apollo’s compressed esophagus many times. The black you see is his esophagus, the “tube” every bite of food goes through to enter your stomach. The curve and narrowing you see is the compression…
I received Milton the Mealtime Companion in exchange for a review. I received no other compensation for this post. Post contains affiliate links. My six-year-old son, Apollo, had a g-tube placed in his stomach when he was just 22 months old. He was born with a rare heart defect, a double aortic arch. Apollo had compression…
Apollo had his check up with his pulmonologist at Seattle Children’s Hospital yesterday. Dr R is our favorite doctor at Children’s. He has been the one from the beginning who listened to us, who values our opinion and considers us experts on Apollo (not all doctors do). He has advocated for Apollo and he encouraged…
Three years ago today, on Hezekiah’s 8th birthday, Apollo had his feeding tube placed in his stomach. This came not even two months after his double aortic arch division. Six weeks after we had been told his heart was repaired. Even the doctors were shocked that Apollo’s eating didn’t improve after his surgery. Finally he…
Yesterday I had an absolutely lovely afternoon with Apollo. Enoch was working, so it was just the two of us all day long. I have never had this particular parenting pleasure…a four-year-old to myself all day. We ate lunch in the sunshine, checked the mail and took a walk. I loved it all. I bought…
Learning to Eat with a g-tube Once upon a time there was a boy who struggled to eat. He was hungry and tired but couldn’t quite make eating work for him. Eventually through surgeries and therapy and endless tears, he learned to eat, but by four a half years old, he was behind on the curve……
Two years ago today, at 7:10 am we handed Apollo over to the surgical team at Texas Children’s Hospital. The journey that led us to Texas was like a long, never-ending nightmare. The ridiculously long wait for a diagnosis. The first heart surgery that was supposed to fix him. The feeding tube. The crying, the weight…