For summer vacation,
we went to Texas and a really cool waterpark called Schlitterbahn. Life with CF
is pretty tough with all the meds, but the most heavy baggage we carry is his
percussive vest equipment. While I appreciate the ability for it to mechanically
shake off the sticky mucous that
accumulates and Fawkes' lungs, the thing is unwieldy and HEAVY. To make matters
worse, whoever designed the bag did not have an active toddler to chase while
dragging the bag. It only had 2 non-spinner wheels and the CG of the heavy item
was way too high leading to the bag to constantly fall down and barely fit in
overhead bins. By the way, I'd never check it. I would not board the plane
before ever being separated with this equipment for my son. It's super expensive and irreplacable. We would have to go back to manual percussion where we beat on him in several spots for 30 minutes which is not as effective. I finally found a
suitcase with spinners that would fit it well! These are really things that
excite me and improve our quality of life. Stock provided case on the left; my find on the right.
Okay, you didn't come here for pictures of suitcases, but I'm seriously that excited about it, I wanted to tell you all. These are actually things that matter to CF families. When we got there,
Fawkes LOVED the water slides. There was a pirate ship with multiple slides
that he stayed on for 2 whole days. The life gaurds knew him and loved him.
Most 6 year olds were going with their parents, but Fawkes, at almost 4, went all by himself.
You know how it is
at water parks. You leave all your stuff on a picnic bench and go to all the
attractions. Most people carried around a waterproof bag with their most
important possession with them, their cell phone. But we had a different
priority. At times, we were on rides that took us quite far away from our home
base, and how could you tell a child, they can't eat until they get back to
their pills 30 minutes away. Well, I had Fawkes' enzymes with me (and some eye
drops, I was having major issues with my contacts at the time; turns out I was
allergic to the material they were made out of).
