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

Joseph

I know I usually post about what is going on in our life or updating about John. However, this time I am going to be taking a little change of a pace. Joseph is my firstborn. He came into the world on August 6th, 2010. I was working at Sears Portrait Studio as a seasonal photographer. It … 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

Kids with Catel-Manzke Syndrome

On Thursday, Sept 21st, John & Lillian were finally able to meet. Last year Lillian’s mom, Rebecca, reached out to me after her daughter was diagnosed with Catel-Manzke syndrome. It was an awesome feeling to finally be able to share with someone some of the concerns with John. Lillian is about 5 while John is … 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

New Toys and a Project Update

John had his appointment with his pulmonologist, Dr, Chavez, last Wednesday in Temple. We addressed his reoccurring apnea events. Also the increase of oxygen he needs, especially while he is sick. Dr. Chavez says we will be putting him on a vent at night while he is asleep. If he is sick then it will be … Read more

May 25th – Backwards

Remember those 140 grams he gained over the past few days? Well, he’s lost them at today’s weigh in. This is a big reason why I don’t like to get too excited. Cautiously optimistic, but rarely overly excited. He’s back to 8.4lbs which is what he weighed on 5/22 I wouldn’t read into thinking we’re depressed, … Read more

John David Miller – Born February 23rd, 2014

John David Miller - Born February 23rd, 2014
John David Miller – Born February 23rd, 2014

I’m late to post. Sorry. John David Miller was born on February 23rd, 2014 at 9:56PM. He weighed 7lbs 2oz.

Normally it’s a joyous occasion, and it was at the beginning, but over the next 24 hours the staff started to be a little “hush, hush” on a series of tests they were running. It’s turns out they were concerned about a few items.

He’s All Smiles

His chin was recessed, his index fingers were curved, and his weight gains were slow. He received genetic testing which came back negative for any of the known issues. He was negative for Down Syndrome or any of the trisomys. Over the next few days, which turned into 2 weeks, he was finally able to come home, but with an apnea monitor as he also suffered from reflux. A home health nurse was also scheduled to come out over the next few weeks.

So with all of the issues we were late to post his birth announcement.