Doctors and more

We had some appointments over the past few days with different doctors. Here is a summary of our visits. Over the past few years, I have connected with other parents whose children have Catel-Manzke syndrome. Some of the questions were based on issues with their children. There is a soon to be 24yr old, 14yr … Read more

Joseph

I know I usually post about what is going on in our life or updating about John. However, this time I am going to be taking a little change of a pace. Joseph is my firstborn. He came into the world on August 6th, 2010. I was working at Sears Portrait Studio as a seasonal photographer. It … Read more

Catel-Manzke Syndrome: Our Journey

The road to adding John to our family was a long and difficult one. Thomas and I actually just decided to start trying right before Joseph turned 2 yrs old. Right as we decided is when we learned we were having our first of several miscarriages. We finally learned we would be welcoming a healthy child … Read more

May 19th – Stumped

Well, so far nothing really new. He did gain weight last night, but it wasn’t enough for him to be able to leave. His team wants to give him another night of feedings and check his weight again in the morning. If no significant weight changes, then the team will make more feeding adjustments. The … Read more

May 12th – Another Surgery & More Tests

John needs at least 18oz of milk in a day. He’s supposed to have 2oz every 3 hours and whatever he doesn’t finish within 20 minutes will go down his feeding tube. He’ll begin continuous feeds Monday night (tonight) at a rate of 1oz per hour. This will be a daily routine each night from 8p-8a. … Read more