When we go to the NIH for the study, we are staying at The Children’s Inn.. By all accounts this is a lovely place for us to be for the week. People have gone to great lengths to tell us that the place is fun for kids, has tons of activities and that the kids won’t want to leave.

Not one of them mentioned that the 4 of us would be in one room with two double beds. While this isn’t a problem for vacation – because who needs rest anyway – it is for this trip. We are putting the kids through 4 days of medical testing. And I want them to be rested.

Remember when I wrote about sleep training (I know, bad parents!) and their illness affecting how much sleep they need (one of the benefits) each night? Currently Quinn goes to bed at 7:00pm and is still pretty tired in the morning when she gets up at 6:30am. Gage goes to bed by 8:30 each night and he’s tired too, but I think his is more growing, playing boy tired. I’m extremely concerned that they won’t be well rested and thus make the poking and prodding more difficult. Now, you remember that Gage just finished up the worst medical year and 1/2 of his life last year, right? He’s sick of poking and prodding. And he’s got some sensory issues, and well, he’s difficult and can be uncooperative. I’m guessing that he will be more difficult and more uncooperative than his usual difficult and uncooperative.

I called The Children’s Inn about getting adjoining rooms so that we can put the kids down and not have to sit staring at the wall until the fall asleep and tiptoe around them for 3 or 4 hours. They said they would put us down for the extra room, but probably we wouldn’t get it anyway because they will probably be full. “Well, thanks, I guess.”

A day or two later I get an email from the coordinator of the study saying that we can only have one room. That if we want to have two rooms they can move us off “campus” and we will have to travel/shuttle in to the NIH (for something like a 7am start time), and furthermore, she really thinks the kids will love The Children’s Inn, because they have so many activities. I worry they will be so tired we will have to go sit in our one room as to not disturb other parents so the great activities won’t really apply to us.

I told her we’d stick with the original plan, but warned her about the potential problems with the kids when they are sleep deprived, and told her to wish us luck.

So, that is the plan. While I am looking very much forward to what we (and researchers) will gain from knowing more about the kids particular mutation (we hope) and add to the pool of knowledge for the ARPKD+ community at large, I am very worried about the week being an intertwined exhaustive mess of kids and parents. But hey! The kids will have activities!

Maybe I should do some live blogging with photos!