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

May 24th – Up

If the information is correct, John gained 100 grams last night bringing him up to 8.12. Our conversions may be off. We’re having to convert kilos to pounds. Long story short, he’s up a lot today, more than what they’re comfortable with because he was starting to reflux and he vomited this morning. For those into … Read more

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 more

May 18th – Continued Prayers

John’s weight dipped lower again, but he is on continuous feeds at night and will remain so when he gets home. His last breathing treatment was at 6a with no need for another one so far. His breathing sounds much better. He is continuing to receive steroid treatments & antibiotics. He’s been eating fairly well, but whatever is leftover … 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

May 12th – Another Surgery & More Tests

John needs at least 18oz of milk in a day. He’s supposed to have 2oz every 3 hours and whatever he doesn’t finish within 20 minutes will go down his feeding tube. He’ll begin continuous feeds Monday night (tonight) at a rate of 1oz per hour. This will be a daily routine each night from 8p-8a. … Read more

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