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┬áseveral miscarriages. We finally learned we would be welcoming a healthy child … Read more

Sleep Study Results

  Joseph started 1st grade this year. He was all excited to go. It seemed like he was trying to tell Thomas, John, & I all to leave the room as soon as we walked in. His most exciting thing from the first day was in Science class was they mixed Lemon soda with pixie … Read more

A Night in “Rocket Town”

John_CPAPpre
Doesn’t he look like an astronaut suiting up?

At the moment John is still at Texas Children’s Hospital in Houston.┬áLast night he slept while using a CPAP. It was intended to provide some assistance until a second sleep study could be scheduled. He slept well for the most part, but did wake a few more times than normal. I would too if I had a mask on my face.

JohnTongue

Tonight, they’re going to perform a second sleep study. This time they’re going to focus on running titrations to determine how much air pressure he’ll need to maintain consistent breathing and reduce apnea events. If the results from tonight’s study are less than desired the doctors will regroup. Basically the next step would be surgical and would take place in Temple at McLane Children’s Scott & White.

JohnJacqueline

As positive as we’d like to be, we’re mostly apprehensive and slightly skeptical. We by no means mean to sound pessimistic, it’s just that when he had his extended stay in May, there were so many times where we assumed the best and were disappointed when we were met with the worst. With that said, hopefully it’ll go well.

TexasChildrens
Texas Children’s Hospital – Houston, TX

I haven’t had much time to explore this hospital. Jacqueline drove home Wednesday evening, then we both drove back that same night. I slept in the room then left early Thursday morning. From what I did see, it’s a little larger than McLane. One section that stood out was the design.

It has a whimsical, bright exterior. That’s the neat part. The not so neat part is that the front of the building is slightly concaved with many reflective windows. Stand in front of those windows and you get the feeling you’re standing in front of a giant solar oven.

Texas Children's Hospital (Front Exterior)
Texas Children’s Hospital (Front Exterior)