Family

Therapy, School, Feelings

We had our annual ARD for Joseph and John to discuss their school and therapy needs. Joseph’s therapy needs We will be continuing speech therapy at school one time a week. We will continue working on the letters S/SH, J, & K. I feel there is another letter, but honestly, I am drawing a blank … Read moreTherapy, School, Feelings

Another Diagnosis & potential surgery

A lot has been going on with the new year and getting appointments set up, doctors seen and making sure all supplies for John have been properly ordered. So I have spent a lot of time on the phone. Some days I feel like I am slowly losing it but I know I have to … Read moreAnother Diagnosis & potential surgery

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 moreDoctors and 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 moreCatel-Manzke Syndrome: Our Journey

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 moreKids with Catel-Manzke Syndrome

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 moreSchool Year has begun

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 moreSleep Study Results

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 moreDevelopmental Levels & Traveling

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 moreSpecial Need Mothers do nothing?

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 moreUpdates galore