Buffets, bowling and bracelets

Buffets, bowling and carefree summer parties… this is Ari & Aviv’s life now! They had their first all American buffet experience at a Sizzler recently (I didn’t know Sizzler still existed!), and while they were not impressed by the food, they did enjoy having free range at the dessert bar. They have been learning to bowl, sticking their hands in bowling balls with the only worry being everyday germs, and not that the previous user’s snack might have left residue that could stop their breathing. They continue to eat their dose each day without any problems – no reactions, no fighting, nada – all of which continues to feel miraculous.

Speaking of miracles I never really thought I’d see… we were told that the boys don’t need to wear their medic ID bracelets anymore! Those tiny silver bracelets, now both smooth and scuffed with wear, have been a part of their bodies since I can remember. Those bracelets were the springboard for hundreds of conversations with people about the boys’ allergies, a constant reminder of the risks that needed heeding and managing. The boys learned our phone numbers by reading the back of their bracelets. They never, ever removed them. And now they can. Even though we were given the green light to take them off, I haven’t told the boys yet. I feel like just announcing it and then taking off the bracelets somewhere between dinner and Lego building seems anticlimactic. I feel like we should treat the shedding of them as a symbol of their new freedom. Any thoughts on how to best do so? Bracelet removal party with a ‘break the chains of food allergies’ theme? I’m open to ideas. In the very early days of the trial, we had dreamed of having a nut party when they graduated (with everyone bringing their favorite food that the boys were previously unable to eat), not realizing that there were so many mind-blowing milestones along the way that made such a party seem obsolete. Maybe it’s not too late for a celebration… My creativity has been tapped with the Tree of Gratitude, the Wishing Wall and the never-ending parade of dose toppings; I’m now open to your ideas for how to best celebrate this visible milestone, so send ‘em my way.

While you think up fun ideas, we’ll head down to SAFAR tomorrow for the boys’ periodic testing where we’re hoping to see continued negative test results. Aviv saw me sitting down to type “my block”, as he calls it, tonight, and asked what I was telling people. When I asked for his suggestions, he said to let other kids who might participate in the trials know how hard the blood tests are. I’m sad that the blood tests continue to be rough for him (we’ll hear his very healthy set of lungs let loose tomorrow!), but there was a small smile that emerged, remembering how skin tests used to be much, much worse for him. He actually told Dr. Nadeau that he preferred blood tests to skin tests when he first met her at age 4. They had a long conversation about the difference between the tests, and she gained his trust by showing him the relatively painless skin test that she uses. No wonder he hated them… back then, his skin erupted in angry red itchy welts to even the smallest skin prick. How amazing to go from that to no reactions in a year and a half. So, so life changing.

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Not related to A&A, but potentially of interest to many of you:

FARE is launching a new series of free monthly educational webinars designed to help people live life well with food allergies. The first webinar, “Supporting Children, Adolescents and Parents in the Daily Management of Food Allergies” will be held Wednesday, Aug. 14 at 1 p.m. EDT. The speaker will be Dr. Linda Herbert, a clinical psychologist at Children’s National Medical Center in Washington, D.C. The presentation will cover anxiety, issues at school, bullying, peer social activities and more. Dr. Herbert will also provide a preliminary set of strategies to help cope with daily stress. To register: https://www2.gotomeeting.com/register/159466530

Dr. Herbert recently joined the Department of Allergy and Immunology at Children’s National Medical Center, where she is building a clinical practice and research team designed to address the mental health needs of children with food allergies and their families. Having seen our family go through an emotional, anxiety-fueled roller coaster both before and during the clinical trial, I applaud the recognition of (and support for) the mental/emotional effects of food allergies on families. Thanks, FARE!