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

Our 2nd Home “Hotel McLane”

Big Thanks! Thanks everyone for the prayers, texts, calls, and messages over the past few days with John being in the hospital. It wasn’t anything we expected or even wanted obviously. He had been sick for most of the month of April. Antibiotics on April 4th, and then again on April 13th it just felt … Read more

3 Weeks

October 20th, 2014 – A lot has happened in the past 3 weeks. Just 3 weeks ago John was getting ready to have his trach surgery, Thomas & I had to travel to the Ronald McDonald house in Temple to stay the night before. I was a nervous wreck because my baby had yet another surgery. … 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

Here We Go Again…

Last night John had a scheduled sleep study at Texas Children’s in Houston. Both Jacqueline and he were scheduled to depart for College Station this morning around 6:30am. During the sleep study it was determined that he had several severe apnea related events. There were enough to contact the on-call doctor as our results would … Read more