We are so lucky to have one of the best dermatologists we could imagine, and he has always encouraged us to do anything we “normally” would as a family, even if we have to plan extra or get creative.
One of those things is traveling.
Even though traveling can be challenging figuring out the logistics for Brenna’s skin care and working around the various weather conditions (we couldn’t believe how much the dry state of Colorado affected Brenna’s skin – we had to apply nearly twice the usual amount of Aquaphor!), we are grateful for the chance to show our kids some other parts of the country and give them new experiences.
Here’s what I’ve learned about taking on the open road with two small kids and caring for a medical condition along the way…
1. Always know where the closest children’s hospital is. A physician we saw in Chicago made this comment to us after Brenna’s g-tube was placed, and it was one of those obvious statements we had never considered before. We researched surrounding hospitals on Brenna’s first trip, and we actually had to stay overnight in a children’s hospital with Connor on vacation.
2. Alert your physicians/specialists and work out plan for contacting them after hours if necessary. We’ve called our pediatrician’s cell phone from the road, and we’ve text photos of Brenna’s skin to our dermatologist from the road – and coordinated a prescription to be picked up at a pharmacy at our next stop. Things always seem to pop up on vacation, but when you’re dealing with a serious medical condition, it’s really important to be able to contact your doctors.
3. Bring way more than you think you’ll need. If you have the luxury of traveling by road instead of plane, you can pack the trunk full of anything you think you might need. Of course, you can always purchase many things while on vacation, but if there are special products, prescription meds you use only occasionally, or specifically favorite foods, bring it all. That also goes for any extras, like a back-up g-tube or any other medical items.
4. If there are special accommodations that need to be made at a hotel, restaurant, theme park, etc., call ahead. Keep a clear record of the agreement of those accommodations and have a plan in place to carry them out if necessary.
5. Let it go. Care might not be the best that it is at home, and that’s OK. I think that “good enough” is much easier for traveling. We always look forward to a great bath after a trip, but Brenna’s skin has been fine when we let her enjoy vacation, even if it’s not at its absolute best.
6. Realize that it may be tiring, but very worth it. And I think traveling with small kids/special needs gets easier the more you do it. I thought our first vacation would be miserable, but the kids rode more than 5 hours without stopping and very little fussing, and the whole week was much less stressful than I had imagined. Practice with smaller, more frequent trips. I’m glad we had some 3-6 hours trips under our belt before we drove across the country.
Do you love to travel with your family, even with the extra challenges of special health needs? What would you add to my list to make travel easier?