Bouncing back

You may have noticed that yesterday’s post was on the darker side; not the usual optimistic, celebratory posts that I’m used to writing, and I questioned whether to share it. It was a tough day and the emotions of overwhelm (good and not) collided. I guess some of those moments were bound to happen. Ultimately, I decided, this blog is about our journey, and not all stops along the way are fun or scenic; some are rough and you wish you could just keep on driving by, but you document those too, if only to help you remember where you’ve been and where you don’t want to go back to. Yesterday was definitely my ‘Toto, we’re not in Kansas anymore’ epiphany… the moment when I came face-to-face with the not-so-shiny side of being in a clinical trial and to being among the first people to try out this multi-allergen, accelerated protocol. Not all the answers exist yet; there are just hypothesis that we are among the first guinea pigs to validate or disprove, and we need to be ok with that uncertainty. I feel like there are a couple of important unknowns for us at this point… whether it is truly doable logistically (not just medically) for a child to desensitize 5 nuts simultaneously, especially when the 5 include varietals that are low in protein percentage (like walnuts and pecans) and thus require ingestion of larger volume, and what type of support (Emotional? Nutritional? Other?) is needed to sustain participants in this accelerated process.

I have to admit that we were in denial from the beginning about the amount of nuts the kids would need to ingest at the end of the trial. I mean, we weren’t told it would be 100+ per day, but we were told, at a high level, that it would be hard (in fact, we were told straight out by another doctor that the reason he wasn’t desensitizing multiple allergens at the same time was due to the impractical ingestion volume that would be needed), but we were so excited that we half ignored the warning/half decided we’d deal with it when the need arose. Time to pay the nut-dispensing piper; the need has arisen. With every incentive in the world to make this work (and a taste of what a normal/not–anxiety-filled life is like), we will throw ourselves into figuring out how to do this, and hopefully can help others that follow us, as well. I have feelers out to find a great dietician/nutritionist to advise us, as well as a therapist to help the boys process all of this. (Any recommendations from you, gentle readers, are certainly welcome.) I also need to talk with Dr. Nadeau about this wave of concern; she is always so honest and reassuring and I know that she’ll help us figure it out.  I’m grateful that she – along with all of you - are part of our support team as we bounce along this windy, rocky road. Thank you.