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

School Year has begun

We’ve started school as of Monday! It has been busy with getting all the items the school needs for each kid. All the forms that every school needs is coming home and I have been busy filling them out. Also there are some more forms John needs to start with speech at school, and having … Read more

Sleep Study Results

  Joseph started 1st grade this year. He was all excited to go. It seemed like he was trying to tell Thomas, John, & I all to leave the room as soon as we walked in. His most exciting thing from the first day was in Science class was they mixed Lemon soda with pixie … Read more

Developmental Levels & Traveling

This is a very over due post. I have just had a very crazy past month with doctor appointments and traveling for a funeral. First up is John’s results from ECI on where he is developmentally. Adaptive average is 16 months with a 40% delay. That breaks down to self care he is at a … Read more

Special Need Mothers do nothing?

Quick update on surgeries. Everyone did fine. Alexander & Joseph did wonderful with their ear tubes. John did well and Dr. Powitzky did above and beyond helping get John into the Operating Room. Now onto another subject that I need to address. So apparently it has been brought to my attention that Special Need Mothers “never … Read more

Updates galore

Life has been crazy busy here in the Miller household with appointments, school, homework, cub scouts, sickness, and soon to be birthdays. We’ve been moving close to 90 miles a minute with not much chance to sit down and relax. So I apologize for the lack of updates. Alexander: He’s doing well, struggling a little … Read more

New Toys and a Project Update

John had his appointment with his pulmonologist, Dr, Chavez, last Wednesday in Temple. We addressed his reoccurring apnea events. Also the increase of oxygen he needs, especially while he is sick. Dr. Chavez says we will be putting him on a vent at night while he is asleep. If he is sick then it will be … Read more