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

Sleep Study

John's Sleep Study

Tonight’s the night! We’ve waited for what seems like months for this night. John is finally having his sleep study at Texas Children’s in Houston.

He’ll monitored until 6:30am. The above photo was taken before he was connected to their wiring and a nasal canula for O2. The staff says he’s the youngest patient they have tonight.

They’ll be looking for apnea events as in how many, how often, and severity. We’ll hopefully have the results by next week.

That is all.

-Thomas
thomas@thomasmiller.me

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