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| Themed cookies to celebrate their first baseball game |
Speaking of, I felt fortunate to celebrate the creation of
an endowed faculty position for Dr. Nadeau at Stanford to help ensure that she
and her amazing team can continue to do research toward treatment of food
allergies. Knowing that she can continue doing her work there is reassuring and
critical for this field to advance quickly, and we are so thrilled and filled
with hope for the better future that she will help create.
With the boys, all continues to progress smoothly. They take
their daily dose without so much as an argument (Orr has perfected fudge-like dose
brownies that they love), and continue to explore and enjoy the world around
them without fear. I smiled watching Aviv give his friend a Reese’s Peanut
Butter Cup the other day, after his friend was jealous of the one in Aviv’s
dose. Jealous of Aviv’s dose! Just writing that makes me giggle. The ‘firsts’
also continue… enjoying chocolate-dipped ice cream cones brought smiles as big
to A&A’s faces eating the cones, as it did to mine watching them take in
the thought of it, then dig in.
We also had a turning point purchase (that
follows in the footsteps of such things as buying Nutella, Bamba, Reese’s
products and ordering from nuts.com) this week when we bought an item that used
to make me shake as I walked past it in the store, as if it would somehow jump
out of its box and contaminate us. Nut-Thins. Tasty little gluten-free crackers
that look harmless but were made out of the enemy: nut flours. Who would have
thought of those entering our house? Not me. Yet here they are, now.
More gratifying to me than the firsts, actually, are the
things that have gone from being novel to regular occurrences. Drop-off
birthday parties, eating at buffets, participating in potlucks at school, going
to Thai restaurants, enjoying carnival rides and chess tournaments… these are
all things that we went from not being able to do, to reveling in them for the
first time, to now incorporating into our routines. I still quietly appreciate how
far we’ve come in each of those moments, but the boys have come to expect them
now, and aren’t as conscious of the magnitude of the miracle. I make a point of
reminding them of their hard work that enabled them to do these things, but
they seem quite nonchalant about them.
We head back down to SAFAR this Tuesday for more testing. (Just
in time, too. We have to stop the boys’ antihistamines 72 hours before testing,
and Aviv always starts to turn into a puffy, congested, crankypants the day
before testing, as all traces of the medicine have left his body. He’ll stay
that way until right after the testing ends, when he can pop a Zyrtec and
resume normalcy.) At this point, we go every six weeks in order to keep a close
eye on the nuts that have gone negative and to see how the fine tuning of the
daily amount affects their bodies’ reactions. We’re hopeful that the changes we
made last time (upping Aviv’s cashew dose to 2 grams and upping both boys’ pecan
dose to 7/day) will have brought cashew and pistachio back down to negative,
and kept pecan at bay. Fingers crossed. There is also a relatively new
tradition at the clinic, where there is a notebook for kids to leave messages
for other kids going through the trials. I asked the boys to think about what messages
they might leave, and will let them have the last word for today…
From Ari: “It will get easier as you move through the trial.
It’s a whole new life now. You get to go to different bakeries and restaurants,
and you don’t have to worry about a thing!”
From Aviv: “It’s been an amazing journey. We’ve traveled
from Israel to California to Costco to Safeway... All because of Dr. Nadeau!”
Indeed.
