This blog has been taken over. Well, not really, of course, but this is Johanna’s mom writing. Johanna is in West Virginia at Camp Oasis, a special summer camp for kids with Crohn’s and Colitis. It’s her first time (not in summer camp, but at Oasis), so she had plenty to worry about before, and I’m sure she can tell you all about it when she’s back.
Today, I want to tell you what I was worried about: that her treatment wouldn’t be disrupted. In her case, that means safe food, or more specifically: SCD. At intake, Johanna got a huge high-five from the medical team when they realized her medication list was… empty. Of course, SCD has been Johanna’s medicine since last year.
Unlike at the Seattle Camp Oasis, “ours” does not offer the diet yet, and the SCD kids (we’re only aware of one other girl) were asked to bring their own food. This was a shock at first (and in some ways pretty upsetting given that this is a specialty camp that offers every bit of support in other ways, with 24-hour gastroenterologists and nurses on staff, and given that the remission rates of kids on SCD are better than those for most meds). But others have managed this before us — our great online support group came through with plenty of tips.
Johanna came up with a meal plan for the week. We cooked, assembled and labeled each breakfast, lunch and dinner and then froze everything over the weekend so it would survive the trip. I typed up the meal plan and followed another mom’s ingenious example to color code it for the chef– blue needs to be refrigerated, yellow meals need to be heated, red comes from the snack box, and so on.
Hopefully, there will be enough food, and perhaps the two girls can share some snacks. But more importantly, I hope they can share their SCD experience with other kids so there will be many more of them joining them next year. (We’ve heard a rumor that Caleb’s Cooking Company will try to supply the SCD dinners for Camp Oasis next year. Keeping my fingers crossed here.)
Please Jojo, forgive me for taking your spot this week. Hope you’ll feel great all week and will have an awesome time there. Can’t wait to hear about it.