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

Hurricane Harvey

Some of you may know, I have recently started helping admin a group that is globally known. It is Mom of Trach Babies. This is a support group for parents of trached children. I have been apart of this group for quite some time. However, recently I became apart of the admin team. Since I … Read more

May 23rd – 8.5

John put on another 40 grams this morning which brings him up to 8.5lbs. Nothing really new. We’re still waiting on a few test results. He did vomit at one of his feedings, but no adjustments have been made. They wanted to see if he’d tolerate the other feedings. Hopefully it doesn’t affect tomorrow’s weigh-in. -Thomas thomas@thomasmiller.me

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 more

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