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

In the Clear, Hopefully

October 8th, 2014 – John is so happy, and is acting like nothing ever happened. He passed his swallow test, so hopefully starting Thursday we can slowly feed him by mouth in addition to his g-button feeds. On Monday morning we had his first trach change. He decided to scare the NICU nurse & respiratory therapist by coughing … 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 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

May 11th – G-Button

John - May 11th
John David Miller – May 11th, 2014

Nothing really new today. John’s dayside doctors didn’t calculate his calorie/volume to determine if he’s taking in enough so this will be calculated tonight. They are expecting to make a decision on Monday whether or not he’ll need a “g-button” (surgically implanted feeding tube).

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May 9th – “Meyii”

John is continuing to improve with his feeds and breathing. We’re still waiting to see how the procedures have affected his weight gain. Thursday (today) was the first full day of his new feeding schedule. He’s currently on IV fluids and oxygen, although both are expected to be decreased and removed within the next few … Read more

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

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