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

Kids with Catel-Manzke Syndrome

On Thursday, Sept 21st, John & Lillian were finally able to meet. Last year Lillian’s mom, Rebecca, reached out to me after her daughter was diagnosed with Catel-Manzke syndrome. It was an awesome feeling to finally be able to share with someone some of the concerns with John. Lillian is about 5 while John is … Read more

Hurricane Harvey

Some of you may know, I have recently started helping admin a group that is globally known. It is Mom of Trach Babies. This is a support group for parents of trached children. I have been apart of this group for quite some time. However, recently I became apart of the admin team. Since I … Read more

May 13th – Improvement

John gained weight last night. He went from 7lb 7oz to 8lbs 1oz, but he’s still going to need a g-button. He’ll remain on the continuous feed for tonight until 5am, then all food stops. He has an MRI scheduled for 10am and surgery for the g-button implant at noon. He had a swallow study today, and passed. … Read more

Millers on the Brazos

We took a trip to the “Birthplace of Texas”, Washington on the Brazos, about 6 miles southwest of Navasota, TX.
Official Website: http://www.birthplaceoftexas.com/