“Cookies & cream ice cream, on a cone, with sprinkles on top!” were the sweet words I heard from Ari tonight, as he proudly stood at the counter of our local ice cream store and ordered. Aviv ordered his celebratory ice cream on a cone with snow caps and gummy bears - firsts for both kids who have not been able to order toppings or cones, and only limited ice cream flavors at limited stores. How did this happen?? Hard for us to believe, too...
Today's appointment went very well, which is amazing since the boys had their monthly Xolair shot (painful, even with Buzzy to help), blood tests (done periodically to check to see the changes in the bodies IgE levels and other indicators) and then their updose to 4000mg. It was sweet to watch Aviv (who went first in each of the scary shots/tests, as always) help the nurse with Ari's blood draw, replacing the tubes, carefully observing the process and asking technical questions. Such a contrast to Ari, who doesn't want to see the needle or talk about the procedure. Finally, with kids settled back in to their bed to watch Empire Strikes Back for the millionth time ("Laugh it up, Fuzzball" never gets old...), we talked through the new dosing with the nutritionist. To give this context: 4000mg translates to 4 cashews, 4 hazelnuts, 3.5 peanuts, 2.75 pecans and 1.75 walnuts for Aviv, and 6.5 hazelnuts, 3.75 pecans and 2.25 walnuts for Ari. Per day. For kids who just a few short months ago couldn't be near the stuff. In addition to that being amazing, it's also a little terrifying for us. All of those nuts now live in our house, and we bake them into little (now big) muffins for them to eat as their nightly dose for the next two weeks.
But more surreal than that was the bombshell news from Dr. Nadeau today: we've crossed the cross-contamination barrier! The boys' daily dose is now so high, that cross contamination is no longer a danger. This means that they can eat foods that have been made in a facility (or on equipment) with nuts. They still can't eat actual nuts outside of their nightly dose, but everything else is fair game. Bakeries. Ice cream stores. Fresh breads. Restaurants. People's homes. Any brand. I had to ask Dr. Nadeau several times to explain what that meant, and - just like in the very beginning, where I had trouble believing that we were really admitted to the study, and had to ask her to repeat things in a dumbed down way so that it could soak in for me - had trouble believing what she was saying. Most of the things on our Wishing Wall are already available? Does not compute. The one limitation right now is that she wants to limit their sampling of this broader world to only when Orr or I are around, as we are trained at this point to recognize even small reactions and handle them (ideally) without need for EPI pens or the ER. So school and any other activities when we aren't around need to remain as is, from a nut-free/protocol standpoint; only if we're with them, can they begin to experience more without worry of cross-contamination. As exciting as this is (and don't get me wrong... this is HUGE), it is going so fast that it will take a while for all of us to truly absorb it mentally and be able to act on all aspects. I thought about going to the grocery store, and realized I'm not even sure which brands I'd want to look at anymore, and am not sure how comfortable I'll really feel bringing them home. Beyond the expanded food options is the critical disappearance of the previously omnipresent risk of invisible dangers. I want to let out a huge sigh of relief, but the sigh is getting caught in a bit of disbelief. I need to reiterate to myself that their bodies are ready for this, even if their (and our) minds aren't.
So that's how we ended up at the ice cream shop tonight. We wanted to celebrate this huge milestone of jumping the cross-contamination barrier, and asked the boys to pick which of their Wishing Wall items they wanted to do first. As if they had been waiting for this question their whole lives (which, really, they had), they responded excitedly and in stereo: Ice cream with toppings! When you're a 5 or 6 year old, the bright colors and shapes of toppings is too much to resist, but when you're forced to stay away, the desire is even greater. Without a second thought, we headed to the local ice cream store where we immediately realized that we needed to start with a primer on toppings and ice cream stores, for that matter. When I asked what flavor they wanted, Ari told me that the store didn't have many. His experience was just that - the only choice they'd been given previously was vanilla or chocolate (because those came from dedicated chocolate and vanilla frozen yogurt machines). I explained that there were many flavors at the store, and that they could even sample different flavors. That blew their little minds and overwhelmed them, so I just handed Ari a Cookies & Cream sample, and he was thrilled.
As for toppings, we had a lesson there, as well, walking through the different types. Aviv couldn't limit himself to just one, and I wasn't about to make him. They had earned this, damn it! After they ate their ice creams, they spent more time peeking through the glass counter at all of the flavors, letting their minds register the fact that this was a new, open world for them.
This has all gone so smoothly, and so quickly, and while we're not done yet, progress is happening and things are definitely changing… I just need to take a breath and pinch myself that it’s real. Moments like tonight, when Orr & I crumbled 4000mg of nuts into muffin cups to make their chock-full-o-nuts cupcakes help to make it feel real, but it’s still going to take time. Some fresh bread (Acme! Arizmendi!) and toppings should help pass the days… : )
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