What an amazing trip! Three full days in Disneyworld and ½ day
at Kennedy Space Center, and the whole trip was smooth as can be. Due to some creative travel logistics, Orr
& I each had to do one cross-country flight with the boys on our own
(outnumbered 2:1!), something that we never could have done before… we barely
were able to juggle the pre-boarding machinations of seat decontamination with
two adults previously; certainly impossible with one. This time, though, everything
was a breeze. Flights were relaxing. Eating anything, anywhere was freeing.
Packing small, easy-to-ingest dose was simple. Watching Aviv touch EVERY single
pole, railing, door, handle, etc. that he could find grossed me out from a germ-standpoint,
but didn’t panic me. And we are probably the only people to ever have derived
pleasure from standing in line at Disneyworld, but we did. Orr and I both
smiled and actually enjoyed the fact that we could stand in line with everyone
else, rather than need an accommodation pass to avoid crowded areas for fear of
cross-contamination. Just to truly show the universe that we meant business,
the boys ate their dose while we stood in line; a double miracle. It felt so
good to actually enjoy the activities and adventure of this vacation, and to know
that we could not have done this prior to the boys being desensitized.
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We had the amazing opportunity this week to meet some of the other families who are in Dr. Nadeau’s
studies, and I was so moved by the number of people whose lives are
being made better each day by Dr. Nadeau’s tireless work. Families who are driving 4 hours each
way, every 2 weeks, for a three year period in order to change their lives…
families whose kids are pioneers in the peanut patch trial – instead of
ingestion of the peanut for the first period of the trial, they wear a sticker/patch
that releases the peanut protein into their system… families who previously felt hopeless,
thinking that there was no other option but avoidance (which, for those with
airborne allergies, is extraordinarily hard to manage), who now are on the path
to desensitization. I was humbled by some who told me that reading A&A’s
story is what gave them the hope and courage to contact SAFAR, and now their
children are in a trial and seeing progress. I am so, so thrilled for them, and hope for more to follow.
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We head back to SAFAR on Tuesday for the boys’ next check-up
and tests, hoping that the nuts that went negative continue to stay negative,
and hoping that the last remaining ones (peanut for Aviv, and hazelnut for Ari)
also turn that corner. I’ll also be giving blood this time, as Orr & I are
periodically asked to give samples for various related research projects that are
being done to understand more about the genetic links for allergies. I have dealt with a needle phobia my whole
life, but when I’m with my kids, and either I or they are giving
blood for purposes of finding answers to cure food allergies, I find myself
strong and happy to do it. Tuesday, here we come!
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