Conquering the morning chaos on Pompe appointment days

It helps to pack the toys, food, and other supplies ahead of our hours of travel

Keara Engle avatar

by Keara Engle |

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Not everybody is a morning person, myself included. Nonetheless, the whole idea of sleeping in went out the window years ago when I had my son Cayden, who’s now age 5. Cayden is a fairly good sleeper, but between his school and appointments, we rarely have a day when we don’t have to wake up early.

We’re no strangers to appointments with specialists. Cayden sees a multitude of them who manage his infantile-onset Pompe disease, and most of them are at a children’s hospital about 2.5 hours away. When he has appointments, we’re up and on the road around the time the sun rises. To save time, I try to prepare as much as I can the night before.

Steps to avoid the rush

For starters, I like to pack the car. I put Cayden’s stroller in the trunk since he’s unable to walk and we keep his wheelchair at school. I also like to pack a bag with diapers, wipes, and a change of clothes. Although we’re working on potty training, he still has accidents sometimes.

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I also like to prepare Cayden’s food for the trip. He uses a gastrostomy tube (G-tube), so I pack bottles of food, syringes, and water so I can administer his feeds. I pack all of them in a lunchbox and throw it in the fridge the night before. The next morning, all that’s left to do is grab the lunchbox and put an ice pack inside.

Additionally, I ensure Cayden has toys, coloring books, and a fully charged iPad in his bag. The long car rides and time spent in waiting rooms can be boring for anyone, but especially a child. These things keep him busy, helping him pass the time as he waits.

Lastly, I use a check-in feature in advance of my appointment, thanks to an app the children’s hospital offers. It gives families the option to sign paperwork and update personal information before the appointment, which cuts down on such tasks that day. I’ve found this feature helpful over the past few years and use it any time it’s available.

Despite all of that preparation, a trip to all those specialists still makes for a very long day. I’m thankful for the tips and tricks I’ve learned that help me limit the tasks that need to be done on appointment mornings. It never hurts to be prepared!

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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