Friday, May 25, 2012

Traveling With Collin

We have spent much of the past week gearing up for our most ambitious adventure yet with Collin. Over ten days, we'll be visiting two major cities, seeing some sights, visiting with family and friends, and doing lots of driving. The amount of planning that goes into a trip like this is even blowing my mind. I have nine separate lists going. First, there are the plain ol' logistical issues (Collin doesn't sleep well in new places; Collin is sensitive to heat and sometimes loud noises [the rest of the time he loves them]; Collin will not UNDER ANY CIRCUMSTANCES go in his diaper in the car seat. He will grouse for miles and miles but he will not give in. A great problem, I know, but it does require some rearranging of the food/water schedule if you actually want to get where you're going at any point.) And then, there is the stuff. So, so much stuff. I tried my best to consolidate things, but here is the final list of what Collin* will be taking with him on this journey:

- toys, books, and whatnot
- a sufficient number of sufficiently cool outfits, including shoes (Collin thinks 'outfit' is a girl word, but there is no guy word for clothing items that match each other. Hm.)
- hats and sunglasses
- jammies
- undies
- dipes & wipes
- potty
- potty mat (to protect the surrounding area from potty-related disasters)
- bibs (the cooler triangle ones that match his outfits)
- bibs (the ugly terrycloth ones for practicing eating)
- feeding tools (spoons and utensils for all of the warm-up practice)
- ketogenic food to taste by mouth
- button covers
- button cleaning supplies
- extra g-tube in case his needs replaced, with all supplies required to do the switch
- Collin's mattress (this is a new thing we're trying in hopes of alleviating the aforementioned sleep issues)
- bedtime stuff (toothbrush/paste, toothettes for rinsing, bath stuff, blankets, paci)
- video monitor
- ketone/glucose checker with enough strips/lancets
- iPad (not that we ever leave the house without it, but I list it here because it doubles as a sound machine)
- all necessary chargers
- nebulizer with breathing treatment meds
- oxygen concentrator (On a shorter trip, we just bring tanks, but on a longer one, it saves space and hassle to just bring the whole concentrator from home. It is about the size of a kitchen trash can and weighs about as much as a kitchen trash can full of lead.)
- oxygen tank (so we don't have to lug the concentrator into the hotel for just one night)
- cannula & backup cannula
- because we are still having issues with the alarms, we opted not to bring the bipap machine or pulse ox monitor
- growth hormone with all necessary needles, alcohol pads, and materials for reconstituting new vials
- all other meds (probiotic, carnitine, CoQ10, B50, Vit D, melatonin, iron, Vit C) & associated materials (syringes, pill cutter, crushers)
- Vitamix (only necessary on a trip longer than 5 days, like this one)
- digital gram scale
- meal supplements (branched chain amino acids, multi vitamin, fiber supplement)
- hard-to-find-at-the-store meal ingredients (special coconut oil, etc.)
- meal syringes (60cc, 1/day)
- extensions (actually connects to the g-tube, 1/ 5days)
- venting syringe (for burps)
- chairs (Collin can't just sit in any chair, so we bring his fold up camp chair for most situations and his booster chair [which is really probably too small at this point] for sitting at the table at home or restaurants)
- Boppy (which barely looks like a Boppy anymore because it is so squashed and used, but it is still great for tummy time and just general floor time).
- stroller and back carrier for sightseeing

And THAT, my friends, is why getting a minivan has made my life so much better.

*Please note that this list DOES NOT include anything the rest of his family might need or want to take on this trip.

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