Just GO!2018-06-27T12:05:22+00:00

Just GO!

by Amanda Upton

My oldest daughter was three months old when she came home with an NG-tube. She was on continuous feeds at night and oral fed every two hours during the day. I felt like we couldn’t go anywhere because our life revolved around feeding. We felt like we needed to be home while her pump was running. When she was four months old, she was switched to an NJ tube and put on 24-hour feeds, and we decided that it was no longer an option to be anchored at home while the pump was running. We started on a quest to travel all over with medical equipment.

Things got even harder when our oldest was two years old and she was put on oxygen during the day. Our traveling needed to adjust again, but this time we had the mindset that medical equipment wasn’t going to slow us down. Since then we have had a second daughter who is also fed via feeding tube and is on oxygen. Traveling looks different for us than it did before we had children; however, we still enjoy getting out into the community in ways that are safe for our kids.

Plan

It is easier to do fun things when you have everything together and ready to go. Have a plan for medical supplies before you leave. Here are some ideas:

  • We keep a bag with all of our batteries and chargers together so we are able to grab it on the way out of the door and have all of the power cords we need.
  • We make 24 hours worth of formula at a time and keep it stored in the fridge in bottles that are filled to four-hour portions (the hang time of our formula). Before we leave the house, we put the bottle in a cooler and fill the pump during the day. Then we don’t have to slow down to make formula.
  • Invest in good storage bags. A lot of medical equipment can be heavy or strangely shaped. We have tried cheaply made bags; however, they typically end with a broken bag and a mess.
  • Keep a bag of spare supplies ready to go. In ours we keep supplies in case of a feeding tube pull out, extra oxygen supplies, and medical tape.
  • Look up the accessibility of the location you are going before you leave so you might know of any obstacles beforehand.

Go

There are many places that are accessible to different needs. Here are some on the places we have found to be fun:

  • Children’s museums: We have found many to have wheelchair accessible exhibits and fun sensory experiences.
  • Accessible playgrounds: Over the past few years there has been a lot more inclusive playgrounds built. We make it a point during the summer to see how many inclusive playgrounds in our area we can play at.
  • Zoos: We enjoy a walk around our zoo because it has paved paths, making it easier for the stroller and wheelchair. Even with animal allergies, my kids are able to enjoy the outdoor animals. Our kids also participate in zoo class at our local zoo, which is open to kids of all abilities.
  • Malls: We enjoy malls because they are wheelchair accessible and have air conditioning.
  • Water parks: This was not my first idea with medical supplies; however, we head to Great Wolf Lodge about once a year and find their hotel to be very inclusive with zero entry pools and pool lifts. There are many water park hotels and outdoor water parks that have a lot of options for different abilities.
  • Amusement parks: We find local amusement parks to be a little harder to navigate; however, we are getting ready to take our kids to Disney World for the third time because they are so inclusive and have something everyone can do.
  • Camping: Many state and national parks have accessible cabins that you can rent.
  • Kids’ shows: We went to Disney on Ice this year for the first time and had a great time. They had wheelchair seating. There are so many different kids of kids shows depending on what characters your child is interested in, and most offer accessible seating.
  • Art studios: My kids love art and they love going to pottery and painting studios to express their artistic sides.
  • Look local: Near us a laser tag business recently opened that has special equipment for people with different needs. Find if there are different businesses local to you that make a point to include everyone.

After

To prepare for the next time on the go, what you do after each trip is helpful in saving you time for the next trip.

  • Restock any supplies you used.
  • Send a message to the place you went to let them know you are thankful that their venue was accessible. This encourages increased accessibility. Post on social media and give good press to places that make it so everyone can enjoy.

Sometimes if can feel overwhelming to go out with kids with different needs, but the best way to get confident in going places is to just go. Have grace with yourself. There are going to be times you forget something or you arrive someplace to find it to be less accessible then you though, but don’t let that stop you from trying again. The more you get out and explore the world the better at it you will get!

Author: Amanda Upton • Date: 6/12/2018

About the Author

Amanda is married to Brent and has two children, Jillian and Lydia. They are both still considered undiagnosed although it is thought that there is an underlying muscle issue with a maternal genetic inheritance as Amanda has many similar symptoms, just not as severe as the girls. They both have GJ-tubes and Jillian is on oxygen and has leg braces. They are the happiest kids, and they both love making people at our local children’s hospital smile. Jillian’s favorite things revolve around pink, purple, glitter, and tutus, and she is ok with all the medical stuff as long as she can make it girly. Lydia loves smiling and cuddling. They are a big Disney family and planning trips to the parks is their stress relief.

Amanda has a degree in early childhood education in both regular and special ed and taught 4K until Jillian was two years old, when she became a stay-at-home mom to help protect Jillian’s lungs from germs. They rely on their faith, friends, and family to get them through the hard aspects of being a medically complex family. Her blog can be found at brownandpinkpolkadots.blogspot.com.

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