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┬áseveral miscarriages. We finally learned we would be welcoming a healthy child … Read moreCatel-Manzke Syndrome: Our Journey

May 20th – Esperamos

We didn’t see any weight gain this morning. That’s the most frustrating part. His doctors have increased his overall intake to see if this helps. In order for him to go home they’re looking for two consistent days of weight gain, back-to-back. Each time there is a setback the clock resets. Overall he’s actually in … Read moreMay 20th – Esperamos

May 8th – Evening Update on John

We decided to use our blog page vs. CaringBridge or Facebook.

John’s breathing tube was finally removed this morning and he was able to eat about 30 mils at around 2:45 this afternoon.

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The Speech Pathologist wanted to personally feed him.

He took it well, and now we wait to see

Read moreMay 8th – Evening Update on John