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

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 moreMay 22nd – 8.4

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 moreMay 19th – Stumped

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