Race Prep - CDH Style
This year’s Virtual Walk | Run | Bike will be here before we know it, and as exciting as it is to participate in raising awareness for CDH, it can also be intimidating to think about navigating the event with some of the equipment that our Tiny Heroes will need to bring along-- but really, that makes it all the more special and important! CDH kids and their needs are so unique, but they (along with their families) deserve their experiences to be as normalized and as fun and festive as possible. This is also a very opportune time to work with your older kids on good habits around exercise and fitness. Here are some practical tips and ideas for making race day easier on yourself and fun for your Tiny Hero!
Power in Numbers: As you plan out what your race day will look like, consider racing in a small group with people who can help as you manage diapers, tubes, equipment, and so on. More importantly, participate with people who encourage you and who you encourage as well. This is a time to cheer each other on. Check Facebook for local families in your area who may want to team up for race day! There are several local grassroots events around the country. Don't be shy–this is a wonderful time to make a connection.
Take the Word "Race" Loosely! Like any physical activity, showing up is the most important part. But especially for something like this, focus on what matters the most: spreading awareness, running for or with your fighter, staying safe and having fun. If you are running with your Tiny Hero, keep an eye on their breathing needs and temperature regulation as you go. Keep everyone as hydrated as possible, even if it is "just" a simple stroll. Maybe you will make a new personal record, but maybe you won't. Regardless, what you will make is an impact and that is what this race is all about.
Plot Your Path, Stay Your Course: Plan ahead on this one – avoid winging it, especially if you are racing with kids. Decide on your distance, whether you will be walking, running, or biking, and map out your route ahead of time. Consider mapping out your route in a very familiar place. If you are racing with babies or little kids, consider using the track at a park. This way, you will be moving in an easy-to-navigate circle of familiarity and playing at the playground can be a great incentive to keep the kids moving. Another option is to create a circular route with your home at the center – this way, you know you have a home base you can hit for bathroom and hydration breaks (and dirty diapers because we all know how well babies like to time their blowouts!).
Deck Out Your Stuff! In addition to wearing your Tiny Hero gear, consider working with your kids to deck out their strollers, bikes and other equipment for the race. It's easy to attach streamers to handlebars or pom poms to pretty much anything. Maybe everyone in your running team wears capes. The possibilities are endless! Make it even more fun by making a little cape for the oxygen tanks or feeding pump because they are heroes, too! Just make sure there aren't any tripping hazards!
Protect the Tube: If you are running with a G-tube, especially one with a tendency for leaking, clean the site and apply new gauze or dressing before you head out. Consider bringing some extra gauze with you if you are doing a long haul because sometimes extra physical movement can trigger a little more leakage. There is no need to apply an extra dressing or cover the site, but you may want to use a barrier cream for a little extra protection from sweat and sticky clothing. If your child is on continuous feeds, be sure to bring an insulated cooler bag for their food. You'll be surprised how quickly things can heat up once you get outside! Click here to see an insulated back that might be helpful if you will need to hang a feed during the race.
Oxygen Needs: Now is not the time to be blasé about how you carry any oxygen equipment. Secure nasal cannulas with some fresh tape (consider bringing some extra along) and bust out a fresh tank if you have one. Be mindful of how you carry the oxygen tank as you run – if you are carrying it on your back, wear something that won't cause extra friction on your skin as you sweat. If you can, though, secure the tank within a stroller or a cart to minimize the likelihood of anything coming unattached while you are all on the move. If your Tiny Hero is using an oxygen concentrator and will be exerting themselves during the run, be sure to set the concentrator to continuous flow rather than a pulse setting – as we exercise, the rhythm of our breathing obviously changes and pulse settings do not account for those fluctuations.
Trach Equipment: Being active with a trach and everything that comes with it can feel incredibly daunting at first but it is absolutely doable. If you are running outside, the most pivotal thing to remember to do is to cover the trach opening to avoid any kind of dust or debris from blowing into it. You will want to make sure you are starting the race with a nice clean tube, so make this an important part of your race prep. You will want the tube to have been freshly suctioned before you head out as well. By now, you are probably well accustomed to transporting all things trach-related, so as you prepare to head out, check the security of all of your gear, and if you are going a longer distance, plan to stop and check for stability in your equipment along the way.
All in all, as race day gets closer and closer, remember to approach the day with joy and positive anticipation, not apprehension or nervousness. As with all things CDH-related, a little prior planning goes a long way and will make your race day seamless so that you can focus on creating memories.
Are you looking for more ways to prepare? Check out our 10 Things to Prepare for the Virtual CDH Race blog!
Don’t forget to register for the race if you haven’t already: 2024 CDH Virtual Walk | Bike | Run
