When you have a child that has complex medical needs you can never plan enough! There are ways to make your trip as enjoyable as possible though by preparing for the worst (but hoping for the best!).
Sometimes I get a little over confident about Sophie's medical status and it always seems to be when we are away from home that she throws us for a loop and has a medical emergency. I think this is true for many kids like Sophie because when you are traveling they get tired, you aren't in your regular surroundings and so they are often overstimulated by all the excitement of being somewhere new or different.
We have done some long distance traveling to Florida with Sophie for the last 3 years and I have learned something new each and every year, what works and what doesn't and some tricks to make things go smoother. Maybe they can help you too!
At the airport
- Talk to the airline and the airport in advance. Let them know that you will be flying with a child who has extra needs which will affect checkin and security checks. We were given the name of a supervisor who met us when we arrived at security who helped us through the process of having everything scanned (including Sophie and her wheelchair). We travel with a lot of liquid medicine including narcotics, formula, water and machines, we had a feeding pump, suction machine, O2 Sat monitor and nebulizer, wheelchair, car seat. Last year we also had her gait trainer with us. Having a security line just for us helped us not feel so pressured to rush through so we weren't holding other travelers up.
-Check the airline and airport websites in advance. There is often an accessibility section like this. By researching this I discovered that parking at the adjacent covered parking is FREE with a disabled parking placard at the airport we use! What an amazing service. We were very thankful for the close parking with all the stuff we were hauling too. We paid $200 for the 10 day stay there last year and it could have been free if I had done some reading then.
- Many airlines will allow you to check a medical bag for free. This saved us $25 each way for this extra suitcase that we had to bring filled with supplies like extra feeding bags, syringes and everything else we use daily for Sophie. We also sent medical items to our destination in advance each year with a family member who was driving (my in-laws are snowbirds). It would have been very difficult to have everything we needed in our suitcases, Sophie's formula alone would fill a suitcase for a 10 day stay. So if there is a way to send items separately and in advance it is really helpful.
-Ask for assistance boarding the plane if you need it. We have to have a fair bit of stuff with us as carry on luggage because we can't risk medicines being lost and I need regular things like feeds, diapers, receiving blankets, changes of clothes, etc. as well as the car seat. The list seems to be endless. Sophie has to be carried on to the plane so that leaves Lucas and I hauling everything. The airline often has someone that can assist you. Ask as soon as the staff arrive at the counter, you can also let them know you need to pre-board. It is a lifesaver when I am trying to install a car seat and get everyone settled.
Visiting large attractions and theme parks
-When we visited the theme parks or other attractions (we have been to Busch Gardens, Legoland and Universal Studios) we asked about special ticket pricing for caregivers or for Sophie herself. Some provided free or half price entrance fees for the caregiver and/or half off for Sophie. We also made sure to get wheelchair tags for Sophie which allowed us to use wheelchair entrances to shows and things like train rides.
-First Aid stations in theme parks or major attractions are a lifesaver. Once your child is too big to fit on the little wall mounted baby change stations it is very difficult to find a place to change them if you don't have your van handy. The first aid stations are the place to be! They have rooms with stretchers to lay them on for diaper changes and they have sinks and clean areas to prepare tube feeds or meds. The staff are always super accommodating and it really made the days possible for us when away from home/hotel. They can also just be a nice air conditioned space to cool off if your child is overheating and stretch when time out of the wheelchair is needed.
Travel in general
-We set up alot of services in advance. We rented a mechanical hospital bed and had it delivered before we arrived. That made it so that we had a place for Sophie to be safe and relax after a long journey. We also had night nursing all set up. We arranged the initial intake for the afternoon so we could work out any problems before the nurse was scheduled to arrive and we were wanting to hit the hay.
-We were unable to find the kind of youth diapers Sophie uses in any of the home health stores. So, I turned to the internet and had some delivered to the hotel from a company that was recommended to me. The company delivered for free and provided excellent customer service, but the hotel at Universal charged a small fee. However, at the time it was worth it to not have to drive around anymore searching for them.
-For those of you that live in Ontario, the Ontario Federation for Cerebral Palsy has a wonderful program that provides assistance for vacations and other activities. It used to be two programs which have now merged to be called the Activity funding program. It is a fantastic non-profit and I highly encourage anyone with CP in Ontario to become a member and anyone can support this worthy cause through donations.
These are just a few of the things that have helped our family have a great vacation when far away from home. Sophie really put us to the test this trip because she ended up in hospital with pneumonia the night before we were flying out to Florida. We were able to have some back up medicines that we needed to put into use while there because the antibiotics didn't cut it. Anticipating all the different possibilities of things that could go wrong really ended up helping us get Sophie healthier faster and we were able to deal with it ourselves. We made sure to carry her seizure rescue meds with us at all times just in case, and she did in fact have two seizures. One while at the hotel and one at her grandparents home, but we were prepared and she was ok. I hadn't planned on taking the suction machine but we did use it so it was worth the extra effort. The peace of mind that came from knowing that we were prepared for being thrown a Sophie curve ball meant we could enjoy our vacation that much more.
