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

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 22nd – 8.4

John gained 40 grams last night. This brings him back up to 8.4 lbs. His GI doctor believes his slow weight gain my be metabolic or genetic related. A stool sample has been “donated” to check for malabsorption issues and a few other related issues. The ENT doesn’t believe he will require oxygen when he returns home, but he … Read more

May 15th – RVP and Coughs and Pedialyte, Oh My

John’s weight remained the same, but he was also on a restricted diet and wasn’t allowed a full feeding due to his surgery.He’s currently receiving 7mils of Pedialyte® through the tube an hour to keep him hydrated. We’re hopeful his weight gain will continue after normal feeding resumes on Friday. His geneticist is running additional tests … Read more