Giving thanks

I’m delinquent in posting my Thanksgiving-themed entry, but not in actually being thankful. So, so much to be grateful for this year…

Amazing friends. You may remember me mentioning the medicine crisis we were in two months ago when we discovered that the only antihistamine that helps Aviv keep his environmental allergies in check (and, seemingly and anecdotally, appears to be supporting his great success in desensitizing) was discontinued. We panicked for about a minute, then went full throttle on the problem. We went to every CVS (the only seller of the generic version of children’s chewable Zyrtec we wanted) around and bought all the remaining supply, but most stores were already out. We tried other manufacturers; no one was making it. We spoke with CVS’ corporate office; they tracked down the issue and confirmed that the product was discontinued because they were having trouble getting enough supply from the manufacturer. They are seeking a new manufacturer, and hope to be able to put the product back on the market soon, but couldn’t estimate a timeframe. They are prohibited from selling product returned from their stores, so the only way for us to get our hands on any remaining stock was to find CVS stores that had not yet received the corporate order to pull it from the shelves. Here’s where our amazing friends come in… I sent out an SOS email to friends in various parts of the country and asked them to scour the CVS’s near them for any remaining boxes. Like a cartoon where boxes start raining from the sky and pile up so high that you can’t see the cute kid in the middle, boxes came. One after another, and another, and another. From Nevada and Florida and Los Angeles and South Carolina and beyond… they arrived. We got emails from those who took on the quest with a vengeance (“I found 6 boxes in Truckee, and am now off to 3 more CVS’s in Reno!”), resulting in us now having enough boxes to last us another year. Every box that arrived brought tears to my eyes… thank you, my dear friends, who made time in your lives to hunt down boxes of little pink pills to help Aviv. (Ari, too, is now taking it, in the hopes that there might be a linkage between regular antihistamine use and successful desensitization.)

A new reality. Small reminders of the life we had just a year ago pop up often and in funny places. Today at the hair salon, a stylist who hadn't cut my hair in over a year was preparing to put the final touches on my head when she said, "I remember that your kids have severe nut allergies, so we need to check the labels on the products to see which ones are safe to use." Yes, even seemingly innocuous things like hair products used to be a potential source of danger, as many toiletries are made with nut oils. And at our Thanksgiving table this year, not only were we free of food-related fears, but we were able to welcome back one of Orr’s favorite desserts. It’s been many years since he was able to make his famous chocolate pecan pie, and Ari certainly enjoyed having his pecan dose in pie form that night! .

Our amazing medical team. From the cutting edge research, to returning calls and emails at all hours of the day and night, we are blessed to have the best medical team one could hope for. Both our pediatrician (Dr. Nelson Branco, who has been with us through so many questions, issues and hospital visits since Ari’s premature arrival seven and a half years ago) and our SAFAR team (Dr. Kari Nadeau and team, who have been amazing and supportive through every tear, fear and step along this journey) help us to solve problems when we’re at a loss, stay motivated when we’re spent, and be hopeful when things seem bleak. Things don’t seem bleak anymore, and we have our amazing medical team to thank for that.

New challenges. This might seem like a funny thing to be thankful for, but I am even grateful for the new challenges that we face each week as the kids’ bodies morph and adjust to their new world. It keeps us remembering how new and fragile these changes are, and how critical it is that we support more of this research through active participation, financial support, education, awareness building and advocacy.  Our latest challenge (beyond the usual cries of ‘I don’t want my dose!’), has been that Ari’s tummy has been bothering him and “too full” for about a month now, likely related to ingesting his daily dose. 60 nuts/day is a lot of fiber, fat and protein, after all, for a little guy.  Yet another new puzzle to solve, so we’re adding some digestive aids and Pepcid to his routine, hoping that will help him.  If not, we’ll try something else until we figure it out. Yes, new challenges both keep us on our toes and remind us of how far we’ve come, and make no mistake – it’s a long way, baby.