Who's the luckiest?

A few snapshots from the week that represent the surreal reality that we're in...

Aviv had his annual well kid visit this week, and the question came up around updating his medical history. "Allergic to peanuts and tree nuts", our pediatricain read from Aviv's chart, and looked at me with a question mark. Honestly, I didn't know how to respond. We don't fit squarely in the 'allergic' or 'not allergic' box anymore. We agreed that neither accurately reflected our reality, so agreed to go with a hybrid/custom response of listing the nut allergies with a notation that Aviv has been desensitized and is currently in a clinical trial. OK, that worked for that situation, but what about others? For example, how should we update our food allergy action plans? All kids with food allergies should have one with clear instructions regarding what to do in certain scenarios (accidental ingestion; upon certain symptoms; etc.). We've had many of these plans in the past 6 years, nicely laminated with a current photo and kept in their classrooms, camp areas, etc., and it was always clear to me how to fill it out. Now it isn't. We'll look to the SAFAR team to help us with this next step as we navigate being somewhere between identifying as "allergic" and "not".

The other moment of wonder came after Orr returned recently from a trip to Israel with a suitcase full of edible treats. Among the treasures was Bamba - a peanuty, puff-like snack. (Think Cheetos but replace the day-glow orange powder with peanut powder.) Bamba on its own is a fascinating story for the food allergy world. Like in the US (where the majority of babies eat Cheerios as their first finger food), the vast majority of Israeli children start with Bamba as their first finger food as it dissolves in the mouth. Why is that fascinating? Because almost every child in Israel under the age of one starts out eating Bamba, and their rate of peanut allergies is extremely low; in fact, Israeli children eating Bamba in their first year of life were found to be 10 times less likely to develop a peanut allergy than their UK counterparts who didn't ingest peanuts. The impact of this country-wide body of data helped inform the American Academy of Pedatric's recent (January 2013) recommendations on infant feeding practices, namely that delaying introduction of foods like wheat, cow's milk dairy, eggs, fish and nuts may actually result in an increased risk of food allergy or eczema, and the early introduction of allergenic foods may prevent food allergy in infants/children.

Back to our lives: needless to say, A&A have never had Bamba during any of their trips to Israel. But they do love junk food, so as soon as Orr pulled it out, they wanted to have it. After summer trips filled with steering Aviv away from it, he now not only got to eat it, but used it to fulfill his peanut dose requirement for the day! Surreal, all around.

Two big things are coming up for us next week...

We head back to the SAFAR team on Wednesday for routine skin and blood tests, with our fingers crossed that the pecan & peanut skin test results either hold tight from last time or improve. We've upped both boys' daily pecan dose to 7/day, hoping that that helps to keep them negative, and Aviv has cut his daily peanut maintenance in half during this environmental allergy season. I'm a bit anxious, but we'll see on Wednesday where we're at.

After their appointment, the boys are going to experience another first: a major league baseball game! They've never been to a ballpark, thanks to the down home, American tradition of eating and throwing peanut shells on the ground at games. Previously, the mere thought of trying to protect them in that type of environment was enough to send our heads spinning. Now, we're giving it a whirl. When we told the boys that they were going to their first Giants game, they were initially very excited. Then Aviv got quiet, looked down, and nervously said, "But there are peanuts there, all over the ground, and I'm still allergic to peanuts." I held him and reminded him that he can be around peanuts now, and that, in fact, he eats them everyday. I reassured him that he is desensitized to peanuts and that he'd be fine there; that the peanuts wouldn't hurt him. He stayed curled in my lap for a few seconds absorbing that information, and then he must have decided to believe me, as he jumped up and ran right back to what he was doing, as if nothing had just occurred. I am always in awe of kids' resilience. As adults, we may be bruised and (virtually) bleeding in the wake of some type of upheaval (emotional, verbal, physical) that spewed from our kids, but they bounce right back to what they're doing. There's definitely a lesson in there for us parents - if only we weren't so bruised and tired to find it!.

As Aviv got the last word in my last post, Ari gets it today. He brought home a workbook from school that has pages preprinted with the first half of a sentence that the kids are supposed to finish themselves. I flipped through it and found an entry from January 7th of this year, where he was asked to finish the sentence "My luckiest day...". Ari wrote (spelling corrected):

"My luckiest day... is when I started the trial. It changed my life. Now I can eat nuts! Now I can eat anything I want!" 

In this crazy, materialistic, entitled, instant gratification world we live in, to have two kids who understand and appreciate how lucky they are to be a part of this groundbreaking research - I think that I am actually the lucky one.