Being free

Tomorrow Aviv and I head down to Stanford for his final updose – 4000mg of nut protein, per nut; 20g total. Final updose?! Can’t believe it. And let me tell you… 20g of nut protein is A LOT of nuts. As amazing as the dose treats are that Orr creates to help disguise all of those nuts for Aviv, it is still an overwhelming amount to ingest. I tried some this week, and while it wasn’t terrible, three bites essentially replaced dinner for me.

It was another roller coaster week; it feels like there isn’t any other kind, at this point. The low was low. Daily arguments with Aviv over eating his dose, including one evening (it’s always the evening when the fur flies, as the clock is ticking down for the day and whatever is left of his dose still needs to be eaten) when he sat defeated in front of a plate full of dose, tears running down his face, screaming, “I. CAN’T. DO. IT! I just want to finish this plate and be free!” Ouch. Punch in the gut. Be free?! Isn’t that why we’re doing this? To be free to eat anything, touch anything, go anywhere and experience life… It made me sad that he has still not internalized that connection. Ari has, which is what motivates him to finish his dose every day. Ari told me he does it, without arguing, because he knows that, once he’s done, he can eat anything he wants for the rest of the day. We couldn’t help but notice the irony the other day when we were at a party and Aviv was restricted from eating the foods there not because of allergy fears, but because we couldn’t let him fill up with other foods until he finished his dose. So much for bring free to eat whatever, whenever.

To offset, there were highs that were stratospheric.  We met with the boys’ school this week to share the good news that we didn’t need any accommodations for the coming school year; they – and we - were thrilled! The days of a nut-free classroom, restrictions on what others could bring to eat, and protocols around hand/supply wiping that had been in place, keeping them safe but causing anxiety for others, were finally over. They are just going to be regular kids, going to a regular class, riding the school bus that the bus driver no longer needs to decontaminate the seats on each morning, and being able to go on play dates without a lengthy prologue. [Aviv may still be restricted from eating actual nuts outside of his dose, but that hardly feels like a restriction for us.] Upon sharing the news, the first question from one of their classmates’ parents was, “Does that mean XX can finally bring a peanut butter sandwich to school?” We apologize for the deprivation; Ari & Aviv will no longer stand in the way of your child’s PB&J. : )   In all seriousness, we feel so grateful to have been at such supportive schools (with incredibly understanding teachers and families) that took the boys’ allergies seriously when they were so sensitive, and put in place protocols and built awareness that enabled us to feel safe when our boys were out of our site. Thank you Southern Marin Jewish Community Preschool and Brandeis Hillel Day School for giving us the greatest gift of peace of mind.

One last note before I turn to pack our standard updose trip bag of extra meds (I’m like a mobile pharmacy), books, games, movies to watch, headphones, updose amount, bulging medical file and notebook, and snacks (incentive treats for Aviv, and regular snacks for me… we’re there for many hours!). Orr started a new job today that we’re all excited about, but will require him to travel quite a bit. The downside to A&A having dose treats (instead of just giving them a bag of nuts at the beginning of the day, and telling them to eat it) is that someone who really knows a lot about baking needs to make those treats, and that isn’t me. 

To tide us over while he’s away, Orr turned our kitchen into a bakery this weekend with different dose treats for each kid and batches with different dosages for Aviv (pre-updose, and post-updose). At this point, Orr bakes a new batch of treats every four days for the boys. My vision is that once they’re both in maintenance mode (where the dosage won’t change every 2 weeks), Orr can make a bunch of treats that we’ll freeze (banana bread, macaroons, cookies, etc.), and then the boys can pick and choose each day. Hopefully that will cut down on the commercial kitchen feeling we have around here, and relieve some of the monotony for the kids. While Ari seems fine with eating the same food all day, every day, Aviv needs to mix it up, so he’s recently started adding other tastes he likes to his dose bites (i.e. a bit of X on the spoon with the dose). His favorite concoction so far is mixing chicken strips with his dose banana bread. If your stomach just churned, I’m with ya. He loved it though, and I’m willing to let him have just about anything with his bites if it will help them to go down faster and easier. Maybe that’s the new form of being free…