Family

Therapy, School, Feelings

We had our annual ARD for Joseph and John to discuss their school and therapy needs. Joseph’s therapy needs We will be continuing speech therapy at school one time a week. We will continue working on the letters S/SH, J, & K. I feel there is another letter, but honestly, I am drawing a blank … Read moreTherapy, School, Feelings

Another Diagnosis & potential surgery

A lot has been going on with the new year and getting appointments set up, doctors seen and making sure all supplies for John have been properly ordered. So I have spent a lot of time on the phone. Some days I feel like I am slowly losing it but I know I have to … Read moreAnother Diagnosis & potential surgery

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 moreDoctors and 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 moreCatel-Manzke Syndrome: Our Journey

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 moreHurricane Harvey

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 more3 Weeks

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 moreIn the Clear, Hopefully