Breathing Easy

Colin is in the ICU recovering from the installation of a trach tube. He also has a new MRI done this morning and we will discuss the results of that when Dr. Gajjar is back in town next week. Continue reading Breathing Easy

New Belly Button

On Monday, Colin had surgery to install a G-tube (a second bionic belly button next to the organic original) and perform a fundoplication, which serves to prevent reflux. Continue reading New Belly Button

Our GiantKid

Today, among other things, the family went off to a Ronald McDonald House outing for GiantKids (children with cancer). Continue reading Our GiantKid

Awaiting the G-Tube

On Wednesday, Colin was scheduled to repeat the swallow study, though it was widely thought that he would likely fail. Continue reading Awaiting the G-Tube

Signs and Omens

The unlayering of knowledge and understanding that comes with the process of an unfolding medical situation is distressing, frustrating and immutable. Continue reading Signs and Omens

Post-Surgical Review

Dr. Wisoff gave us a quick post-surgical report, even before surgery was over (Dr. Harter was overseeing the closing procedure). Continue reading Post-Surgical Review

Bound for the Big Apple

Today, we made a big decision regarding Colin’s treatment: we will be taking him to New York City for surgery on Wednesday by Dr. Jeffrey Wisoff of NYU. Continue reading Bound for the Big Apple

Still Planning

Tuesday morning, we had scheduled a meeting with the two neurosurgeons and oncologist, but due to logistical snafus, it never took place. Continue reading Still Planning