Doctors and more

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

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

School Year has begun

We’ve started school as of Monday! It has been busy with getting all the items the school needs for each kid. All the forms that every school needs is coming home and I have been busy filling them out. Also there are some more forms John needs to start with speech at school, and having … Read more

May 20th – Esperamos

We didn’t see any weight gain this morning. That’s the most frustrating part. His doctors have increased his overall intake to see if this helps. In order for him to go home they’re looking for two consistent days of weight gain, back-to-back. Each time there is a setback the clock resets. Overall he’s actually in … 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 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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