Everyone goes to Disney World- how hard could it be?! With three kids, including one with severe Gastroesophageal Reflux Disease (GERD) and asthma, it did seem like a daunting task. But I am a pretty organized, energetic mom so I was ready to take my turn at the Magic Kingdom.
While the kids watched the countdown clock on the Disney website and studied The Kids Guide to Disney World until it was worn and ragged, I planned and prepped for the trip. At the time, my daughter Rebecca was 6 years old but the height and weight of a four year old due to severe GERD. A few months prior to the trip, she had a Nissen Fundoplication surgery and still needed a feeding tube (gastrostomy tube) for day and night feedings to help her gain weight. The first task was to get all of the prescriptions and medication I could possibly need for the trip as well as a case of Pediasure (liquid nutrition drink in a can for the tube feedings). I knew we would be miles away from a grocery store so I had to pack all of the carbohydrate rich foods my picky eater might decide to nibble on between the tube feedings. The stack of luggage was enormous and the medicine bag was enough to supply a MASH unit for a month.
Disney is a great place for a child with health issues. The hotel staff was very helpful and accommodating, even giving us a bigger room so we could spread out with all of our gear. The housekeeper surprised us by arranged the cans of pediasure into a pyramid on the counter, much to the delight of the children! They were also thrilled to see their stuffed animals tucked into bed each night with a chocolate in their paws when we returned from the fireworks!
It was so easy to take the monorail from the park back to our room for a tube feeding or a puff on the inhaler for her asthma. I think we all appreciated having an excuse to take a break in the middle of the day! Best of all, we were free of the medicine bag and the feeding pump while in the park. We just blended in with all of the other families, our secret safe in the hotel room.
Even though I still needed to methodically follow the medication and feeding routine, it was a pleasure to get away from home. While the routine and sameness allow a child to feel their best, it takes its toll on the caregivers. I must say, the day is much brighter when the drudgery of measuring the medication and cleaning the feeding pump is followed by a ride on Pirates of the Caribbean. Plus, I didn't have to prepare meals or arrange the cans of Pediasure on the counter for the entire trip. It was a dream come true!
We did have a wonderful trip and certainly found the magic in the Magic Kingdom.
It is just like the commercial on TV:
Three day Park Hopper Pass for a wide eyed, energetic 6 year old with acid reflux...$216.00
Ticket for a Kids Meal at Chef Mickey's for a kid on tube feedings who ate more ice cubes than food...$16.95
Seeing her tremble with excitement and laugh with her whole body while meeting her favorite Disney character, Winnie the Pooh....Priceless.
Published On: July 28, 2008