3. Call ahead and request transportation. This was us last year: Two parents literally running through the Atlanta airport carrying an infant in a carseat with a blanket propping up his bottle, wearing backpacks and lugging more luggage than technically “allowed” simultaneously dragging two young children wearing small monkey backpacks/leashes while mixing up cornstarch and trying to suck it all up with a syringe because we’re 10 min. past due. Barely making the tram and praying the next flight is also delayed- or at least knows we’re coming.

This was us this year: Serenely (well, as serene as anyone can be with four kids after flying across the U.S.) driving in a bus on the tarmac, waiting for a B57 to pass before we continue our 5 min. drive to the next gate that took us 20 min. to run to last year. Arriving with a few minutes to spare before the next cornstarch dose was due. Aaaah. The peace.

In another airport they just transported us on a little go-cart to the next gate. Nice, but not as exciting as the little bus.

When you make your airline reservations, ASK FOR TRANSPORT!!!!

4. Reserve your hotel and rental car ahead of time and don’t be ashamed to ask for a medical/hospital stay discount. Try to ask someone who has stayed at a hotel in the area for a reference. Never go off pictures online-again disaster from last year, but at least I got my money back. We really liked the Hampton Inn in Gainesville. It was a bit older but so are most of the hotels in Gainesville. It has been remodeled though and while it isn’t the best looking Hampton I’ve ever stayed in they went out of their way to accomadate us. Everything from a room at almost half price because we were visiting Shand’s Hospital, to making GSD friendly eggs for the complimentary breakfast. The attendant even asked how many days we would be staying so she wouls be sure we would not have a wait for the eggs next time. There is also a pool- albeit right off the freeway. The best part of the hotel, however, would be the beds. Very nice.

I hope these few tips help. If you have any of your own please share!

As anyone who has read my other pages on this blog knows I am a huge fan of simplifying. The simplest way for our family to do and store cornstarch is in Snack sized Ziploc bags and 3oz bottles of prosobee. Some people prefer cups with a sealable lid, but that’s just too bulky with multiple GSD kids. The simplest way to bag cornstarch is to buy it in bulk. Once a month I special order two 25lb. bags of Argo cornstarch from Winco Foods. Every Tuesday morning we bag cornstarch for all the boys for the week. In the van I keep a 24 hour supply. (Their doses of cornstarch vary by time of day). In the 24 hour kit I also store three 60cc syringes, one bolus feed g-tube (they share in an emergency), one can of formula and a bottle of water. Keeping it in the car has already saved us in one instance when we just couldn’t get home in time for their next starch.

In our 72 hour kit for the family we have enough food and water to last our family a bare 72 hours. (canned food, etc.). We also keep enough doses of cornstarch and canned formula to last the full 72 hours, as well as several baby bottles for our infant, diapers and wipes. In addition we keep 8 feeding bags (our two youngest are still on continuous feeds at night), 6 syringes, 2 g-tubes, 12 I.V. sponge packets (we use these around their g-buttons), 1 roll of medical tape, a portable gram scale and a checklist that includes things we can’t keep in the kit such as feeding pumps, additional baby bottles, and medical notes from their GSD specialist.

This is a lot of stuff, but it is all necessary. We should probably keep changes of clothes, but it would simply take up too much room. All of these supplies are kept in two bags in our coat closet for easy accessabilty. Some people choose to use huge Rubbermaid Storage boxes and include tents and blankets/ sleeping bags, but if it were an emergency where we had to be bussed out (like Hurricaine Katrina victims) there is limited space, so I think packing light is the best way to go.