Life threw us a curve ball a few years ago when Lincoln was given the diagnosis of food allergies: egg, dairy and peanut. I received a call from the pediatrician's office, after an office visit and lab draw, confirming what we had suspected (dairy allergy), but worse (egg and peanut too). The fill in doctor asked where we wanted the epi pen sent and left it at that. Working in healthcare, I immediately looked for an allergist. It was an agonizing wait as weeks went by before we could get in to see him. That appointment was eye-opening, as he laid it out to us that we were lucky he hadn't seen a full blown anaphylactic reaction in the recent weeks (as it turns out, he had what was considered anaphylaxysis reaction twice before being diagnosed). The new orders were to strictly avoid his allergens, in all forms (except baked) and come back in a year. We were on the first step of the "milk ladder" with no opportunity to move forward.
To say I felt deflated is an understatement. I could barely think straight. Egg and dairy are in almost everything. Or so it felt at the time. Lincoln was just over 1 and I was thinking it was time to stop breastfeeding (so much for that thought); I hung on another year because frankly, it was the safest alternative for him. Shocking to learn, kids die from food allergies, including dairy, egg and peanut. I was so sad for him, wanted to curl in the corner and have myself a good cry. But I had no choice and opted to pull up my boot straps and learn how to move forward. Things could be worse, I knew that, but it sure did suck.
We spent the next year being diligent in reading labels. I hated going to the grocery store, it was disheartening to see just how much he couldn't eat. From crackers and noodles to meatballs, chips and desserts. He had limited options, and anything processed (think granola bar) was super expensive because it had to avoid his allergens. We often shopped at 3 different stores plus an online chocolate store just to find everything he could eat. We educated those around us, or tried. Some weren't willing to understand, others went out of their way to include Lincoln in meals (let's just say it meant the world to me when people went tried to accommodate him, or even think about him). It became increasingly difficult to attend gatherings, as we had to follow him around and watch him like a hawk. He was a cute little toddler, and people like to feed kids. I joked to Ryan we should find a shirt that read: DON'T FEED THE GREMLIN. :)
Fast forward to our second appointment with the allergist, which gave us some good news. Lincoln was just about 3 years old and the lab results came back somewhat in our favor. He had outgrown the egg allergy. We were elated to add egg back to his diet. While we still had to keep reading labels, his choices for foods opened up a little with the addition of eggs. His numbers for both dairy and peanut also fell, but the orders were to keep avoiding and come back in two years. two long years. I was beyond disappointed, feeling like we were never going to get past this dairy allergy. We fell into a routine and life moved on. Because again, and as long as we could keep him safe.
And then this summer, we got a call that his epi pens at school were soon to expire. A quick call to the pharmacy for refills, lead to a phone call from the allergist nurse, who informed us his allergist had retired. While the new-to-this-office allergist was willing to prescribe a refill, she had looked at his chart and wanted to see him for herself. The nurse went on to tell me that this allergist has an entirely different school of thought and would likely want to start climbing that food ladder for dairy, possibly even peanut.
I was stunned. Could barely respond on the phone. We spent 3 months waiting for this appointment. As we sat in the office, the new allergist was patient and sweet as she explained how she strongly believed Lincoln had outgrown his dairy allergy (and possibly peanut!). She was confident we could start feeding him dairy, immediately. The new instructions included food. FEED HIM DAIRY! We couldn't believe our ears. Excited and terrified all wrapped into one (let's keep in mind, kids die from eating their allergens, so it wasn't out of the realm to be terrified). Following the doctors orders, we started off with pizza. Real pizza. And then watched him closely, and barely slept that night waiting for a reaction. But that doctor was right....he was fine. So we moved up on that ladder, and continue to do so.
As we started sharing our exciting news, our friends and family were happy. The girls were out of their minds excited, and Lincoln keeps saying "I can eat actually dairy" (goldfish, chocolate, breakfast foods, and cheese!). But there was one comment, that struck me deep. Through all of this, there is one other person that gets it. The sweet cook at his preschool (who is actually the assistant director), with tears in her eyes and a big hug for Lincoln looked at me and said "I'm so excited for you! Every day I make up his food separately and wonder how you are going to do it when he goes to school". Talk about tears. These last couple of years have been downright challenging. And no one understood quite like she did. She read labels, she sent us photos of those labels to double check and find the hidden dairy. She got it. And it made her just as sad.
We continue to try new foods every day, and his excitement brings us so much joy. His comments are so funny and watching his face is priceless! We love you Lincoln and are so excited for you!
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