Jordan's update May 26 2019
My wife usually shares most of our thoughts and insights regarding our journey with Heston, but I thought I might share a few that have been on my mind lately. Yes, I’m worried and anxious Looking back, I think every new parent feels a bit inadequate when they first realize that they are suddenly responsible for the care and well-being of their new baby. With our first child, I remember listening at night for breathing, feeling a hint of worry that everything might not be ok. I became more relaxed the more kids we had, knowing that my fear was unfounded. There is a daily weight knowing that this fear is not unfounded with Heston. When I listen to him breathing at night, it is not even and steady. Although that is his normal night breathing, it is still unsettling, knowing that there is always the possibility that he will simply not be there in the morning. This is always a possibility with children with Heston's disease. During the day I feel extra s...