The journey of traveling with a child who has LCHADD has a lot of similarities to anyone who decides to travel with children. There are the similarities like the story above, but also there are the missed naps, tantrums, songs sung to pass the time, beauty of new places, the joy of raw education, and the smell of hotel rooms. Amidst all the similarities, differences exist as well…and these differences can lead to adventures in and of themselves!
Lets start with exhibit A (the picture to the right of the screen). Now if you are an FOD/LCHAD parent reading this, the sight of the suitcase on the side of the screen probably brings a chuckle or a knowing smile…but if you are with the security at the airport the look on your face might be quite different. The largest responsibility I have found in packing for our trips with Christopher is making sure that we have all of his medical formula, medical supplies (glucose monitor ect.) and his
precious MCT oil. I have to make sure that we not only have enough for the
trip but enough in case we get caught somewhere because of bad whether, car
breaks down or he has a crisis and has to stay in the hospital. Then there are those every day
experiences you have to prepare for…like spilt milk (i.e. medical
formula)…literally! So every trip
we go on I count the cans and do the math at least 3 or 4 times to make sure
that we have enough. Then there is
the MCT oil, this precious oil that gives him vital energy throughout the
day. Have I wrapped it enough with
towels, so it won’t break? Is it
easily accessible? If we are
visiting larger cities there is the comfort that we might be able to find it in
a natural health food store, but in the small towns finding this important
medicine would be more than challenging.
Carrying this load of formula with us in our car is one adventure, but
carrying it on the plane is another.
We have been really lucky going through TSA so far. We carry a special letter from Emory so we can carry all of Christopher’s medical supplies, including his oil
and formula, in a carry-on bag (you can’t risk putting it on checked
baggage). They scan and test
everything for explosives, then let us through. I am so glad that Southwest Airlines does not charge for your first
two bags…because it would be nearly impossible not to check bags when you have
to carry this much medical formula with you!Now lets talk food. By plane we carry a mini-cooler with a large assortment of snacks and meals, and by car we pack a very large cooler. I must admit meal planning was something that I had to get used to when going on trips. Before Christopher was born when Ryan and I would go on vacation, meals were a lot more relaxed. Sure we would take snacks with us on road trips andcook at our destination, but during vacation time we eat out a lot more and were concerned less about meal planning. Now it
is so different because we know that eating well is
so much a part of keeping Christopher healthy, we can’t take the “break” that
we used to on vacation in regards to eating strategically (and I suppose we eat
better because of it). Before a
big trip we always talk with friends or family to make sure that we will have
certain staples when we get there (i.e. yogurt, potatoes, salad, peas). Then we have to sit down and discuss
the meals for the week: What meals will be “Christopher-Friendly”? What meals will not be? I try to make muffins ahead of time to
always have on tap and fresh fruit and veggies are an easy go-to. It is wonderful when friends and family
offer to make a “Christopher-Friendly” meal when we travel because it frees my
brain up for one or to nights! I find the most challenging thing about traveling via car is making sure that we have enough food for Christopher for several days. Occasionally we are lucky enough to find a place to stop and get sushi or I can peel part of a chicken breast away at Chick-fila and add our own sides, but we have to plan as if these options do not exist, just in case. Christopher at this stage is really accepting of what he can and can’t eat while we are traveling. He is way more concerned with having a chance to play and having a cup with a straw in it when we stop to eat, than whether he can actually eat something off the menu.
The last two things that linger on my mind that wise older FOD parents have warned me about:
“Always make sure that where ever you
travel to has a kitchen.” and “Remember that excitement uses more
energy/calories.” We have been
really lucky because so far all of our trips have provided easy access to a
kitchen…but I know that as we plan out future family trips this is something
that will remain on the fore-front of my mind. The whole excitement piece…I feel so grateful for the warning! So far Christopher has
done really well on trips, not exhausting himself from excitement, but I feel
like I have to give credit to the families that have gone before us and shared
that excitement can lead to extra calorie use and thus lead to metabolic
crisis. This warning has made us
super vigilant on trips to feed him often even though it seems as though he is
sitting more and possibly not using quite as much energy.On a completely different note, I did want to let everyone know that we met our fundraising goal of $10,000 and that the clinic was very excited and grateful! I apologize for my delayed response in letting you know (as many of you know I have been having some of my own health challenges the last couple of months). If you meant to give but didn’t get a chance you can still give using the link to the side of our blog or by mailing in a check to the address below. Please e-mail me if you gave and didn’t receive a tax credit letter, or the letter was mis-printed in any way!
