Initially, he did fairly well. He went through the usual surgeries that these kids have ( closure of his back at one day old, VP shunt placement with multiple revisions, etc.), spent a bunch of time in the NICU, but was able to come home I think, about 3-4 weeks after his birth. The roller coaster of the first few months started to level off and eventually we were able to start some great PT and OT, hopeful for the progress we might see. He did make progress until around his 1st birthday when he started developing symptoms from an Arnold-Chiari malformation of his hindbrain. This led to surgical intervention on his upper cervical spine, which was initially quite successful, but as Luke continued to grow over the next year he became more symptomatic.
He eventually developed more swallowing and breathing problems from the compression on his hindbrain and passed away when he was about 2 and a half years old.
There's much that can be said about the death of one's child and the seemingly lack of God's dramatic intervention.
When I tell people about our time with Luke I say that it was the hardest time of our lives, but in a sense it was also the best time in our lives. It was good not only because we had the privilege of having Luke with us on this earth, but also it was a time when we were completely dependent on God just to make it through each day. As we go about our daily activities it's easy to forget that "in Him we live and move and have our being." It's easy to think that we're in control of our lives. But this was a time for us when we painfully realized that we couldn't control anything. Luke's progress or lack of progress was completely out of our hands. We couldn't even depend on Luke's next breath. So we were forced, and I mean forced to depend on God. And He seemed to show up each day. It wasn't always pretty, but somehow He helped us manage not just from day to day, but hour to hour. Looking back, I can honestly say that this was a time when we felt God's presence i! n our lives more than we ever had before or since. To paraphrase C. S. Lewis, pain was truly God's megaphone in our lives. And for this, we are truly thankful.
Rod and Sharise Woerther