Haley Pinciotti

View Original

Visit 4

We got back from visit 4 a few weeks ago. We’re halfway through week 3 of our 11 week cycle and things are going really well so far! This cycle is a couple weeks longer than they have been previously and we always add an additional 2 weeks as a buffer in case Luca gets sick, or we need to skip treatment days for any other reason. That means that we will head back to California at the very end of July—just enough time to have this baby!

Luca had three days of appointments and on the first day he challenged what he had been treating the previous weeks—pea protein, sesame, and hen egg yolk. He ate a large amount of each food followed by 5 minutes of running or trampoline jumping and thankfully, passed each one! Gia tagged along with us this time and was a great little cheerleader for her big brother during his appointments. I think she had fun chasing Luca down the halls of the clinic! Luca is allergic to eggs but not to pea protein or sesame. Treating these foods will help his body when he treats his more severe allergies later on in the program.

The following 2 days, Luca introduced a minuscule amount of pecan, hazelnut, flaxseed, and denatured goat milk. Each food was eaten and followed up by 15 minutes of rest. He didn’t have any issues after either introduction day which meant we were free to enjoy the sunny California weather! One of the things I love about this program is that appointments are so efficient. At our local allergist we would be stuck in a tiny doctor’s office exam room for hours, just to challenge one food. At SoCal, we challenge or introduce up to 3 foods per day and are there for probably no more than an hour and a half. We always get one of the first appointments of the day and it allows us lots of time to explore and have fun.

We hit the beach multiple times during our trip. The weather was 70 degrees and sunny and the ocean was absolutely freezing, but Luca had no problem with it. Gia absolutely loved the sand the last time she came along with us but this time wanted nothing to do with it! She happily sat on a beach towel playing with a shovel and eating sand covered snacks. She did end up finally warming up to it though!

Since we had both kids with us and this would be our last trip as just a family of four, we went to Legoland! We had SO much fun. The park was filled with lots of kid-friendly rides and several really cool playgrounds that both our kids really enjoyed. Luca could ride almost everything there and even went on his first roller coaster!

Gia came down with a cough and fever about halfway through our trip (because of course she did), and she wasn’t feeling her best. She was a trooper though and was nice enough to not get her brother sick until after we got back home. That’s something we worry about every time we get ready to leave for a trip to California—illness. Luca cannot challenge or introduce foods if he is sick because with his immune system on overdrive he is more likely to have a reaction. I was so afraid we were going to wake up to Luca catching whatever Gia had during our stay and that it would derail the last couple appointments we literally flew across the country to go to, but thankfully it held off until we were home. Once we got home, he spent the entire weekend on the couch feeling pretty miserable but he’s back to his normal crazy self now.

The food situation gets more time consuming and complicated with each visit. Luca has to eat 13 different foods in varying amounts every morning, 4 different foods in the afternoon, and his antihistamine at night. There are also 6 foods he needs to eat 3-5x throughout the week. Quite frankly, it is getting to be A LOT. It is really time consuming for us to prepare and it’s so much for Luca to eat. I am constantly amazed at how well Luca does with it though. He eats it all, rarely ever complains, and as much as this has felt like it has taken over our lives at times, it has somehow become just another part of our daily routine. 

It was just one year ago that we made our first trip out to California. We were so intimidated by the travel, the treatment, the cost, and the logistics of beginning SoCal’s Tolerance Induction Program but we have made FIVE trips all the way to California and back in just under a year and as impossible as it all felt at first, it feels like we could do the trip with our eyes shut now.

Every single time we go back to California Gabe and I say to each other, “it feels like we were just here.” It’s so funny to think that a city 2,000 miles from our home is so familiar to us. Every trip we take, we depend less and less on our GPS. We have a family membership to the aquarium in Long Beach. The managers at the restaurant we frequent while there, know us and remember us every time we come in. I know the Target by the AirBnB we stay at (which might as well be our second home) like the back of my hand. We’re under a lot of stress on a day to day basis, but I’m finding that sometimes all you can do is laugh at life’s crazy surprises. If you had told me 2 years ago we would be doing something like this, I would never have believed it.

***

This week is Food Allergy Awareness Week, which exists to bring awareness to the seriousness of food allergies and to educate others. It’s been almost 4 years since that terrifying day that started us on this journey and I am really proud of the progress we’ve made as a family. I’ve found that food allergies are really misunderstood and misrepresented in the media and I’ve made it my mission to learn anything and everything I can about food allergies and to educate anyone who will listen. I’m so grateful to those who have taken an interest, and to our village—who has supported us time and time again, in keeping Luca safe and included.

As difficult as this last year has been, it’s nothing compared to living everyday without the hope of a life free of food allergies. Four years ago I was scared to feed my kid. And now? Luca is eating the actual foods he is allergic to every day. A couple years from now, he should be eating anything he wants. One day all the food prep, the medical bills, the constant traveling, and the late nights spent worrying will be worth it. I am so grateful that we took this chance, because being able to see a light at the end of a very dark tunnel has truly changed our lives. We are on a crazy whirlwind of a ride, and I can’t wait until we are reaping the rewards of so much hard work.