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).
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 more