Embracing the Gadgets

Before I had my two children, I was never much of a kitchen gadgets or appliances person. Most of what I needed to do in the kitchen, I could do by hand, and I didn’t want to pay for them, didn’t want to clean them, and I didn’t want to try to find space to store them in our usually small kitchens.

And then FPIES.

My oldest had a long list of fails as a toddler, but wheat was one of our safes, and there were a very, very few types of packaged breads he could eat. But between on-and-off availability and shifting ingredient lists, I would spend what felt like hours in the bread aisle muttering ingredients aloud to myself, trying desperately to find a loaf that was dairy-, egg-, soy-, and corn-free.

The most frustrating thing about this experience (apart from doing it several months pregnant and with a toddler), was that it shouldn’t have been that hard. Bread doesn’t need all those extra things in it. When my local grocery stores stopped reliably carrying anything we could eat, I started researching bread machines. My mom, always finding ways to help in our FPIES journey even while living in another country, offered to buy us one. Thanks to the wonders of the internet and free two-day shipping, it arrived that week, and I immediately put it to the test.

It sounds silly to say that a bread machine changed my life.

But I use it 2-3 times a week, and have for over three years now. I make all our own bread. No more wasting ten minutes in the bread aisle. No more dealing with the ever-mounting frustration as you realize that this loaf has whey, and that one has corn flour, and this one has soy in one of its myriad forms. Instead, five minutes of measuring, one push of a button and in less than four hours, there’s a fresh loaf of bread ready to eat. I’ve also used it to make pizza, soft pretzels, cinnamon rolls, hamburger and hot dog buns, dinner rolls, and naan. It’s gotten me through two FPIES kids, my youngest with only a dozen safe foods at the moment, and my own diet, which is dairy-, egg-, and corn-free.

Could I have made all of those things without my bread machine? Maybe. Theoretically. But the stress, hassle, time, and mental energy it has saved me has been huge. And, realistically, I don’t know that I would have been brave enough to try. There’s just something so intimidating about yeast.

Even with as much as I love my bread machine, it still took me a while to embrace other kitchen gadgets, probably because my oldest started to outgrow his FPIES, thus opening up so many more commercially made foods, and I had hopes that my youngest would as well. But as my youngest is now approaching three, and showing no signs of outgrowing FPIES any time soon, I’ve started to cave. He deserves fun foods too, and if I don’t make it myself, he usually can’t have it.

A candy thermometer allowed me to make lollipops, and, more recently, marshmallows. An ice cream maker purchase after our recent move to Texas gives him a treat to help beat the heat. The waffle maker has been fun for our whole family – including any overnight guests we have.

As FPIES parents, we need all the help we can get in the kitchen. I’m not saying you should go on a spending spree and rack up credit card debt stuffing your kitchen cupboards. But if there’s a gadget that could make your life easier, and you can afford it, go for it! Maybe there’s something like a waffle maker, that would let you try a new texture or presentation for your kids, or a gadget that will do what you’re already doing by hand, but in less time and with less effort. I know some families have found a Vitamix to be a huge help in making their own milks, or have gotten a lot of use out of a stand mixer.

It doesn’t even have to be something that would cost hundreds of dollars to be a big help. For some reason, I have always been completely incompetent when it comes to making cut out cookies, and I finally just gave up altogether. Less than $10 for a set of plunger cookie cutters, and a little experiment with a recipe, and now my kids get to enjoy their own animal crackers.  You can find that recipe here. 

This new perspective has helped my focus change from what we can’t eat or make, to thinking of ways that I can work around certain problems. Instead of “Oh, he’ll never be able to enjoy that,” I think “What would it take to make that? Is it worth it? Are there any alternatives? What else could I make that would be similar but still fun?”

 FPIES is a battle, no doubt about it, and a well-equipped kitchen can be a strong ally.

Now if you’ll excuse me, I think I have some more gadget research to do…

What gadget would you splurge on that would make your life as an FPIES parent easier in the kitchen?

This guest blog post written by Janie Dullard. Janie lives in Pearland, Texas with her husband and two children, both diagnosed with FPIES as infants, though her oldest has now outgrown it. She works as a freelance editor and has written a children's book, available here: https://www.amazon.com/Elephants-Tour-Yellow-Umbrella-Company/dp/0990799522/ . Her days are spent chasing after her two preschool-aged children, working, and concocting strange FPIES-friendly foods that her children will sometimes even eat.

An Interview with the Awareness Critters Creator!

I was working on my master’s degree in health communication when I met my husband. Fast forward a year and a half later, I was sitting in the NICU with our newborn daughter feeling like I should have paid more attention to the practical aspects of the degree I had been working on. I thought when we left after that hellish week, that would be the worst health thing our daughter would ever go through.

I was wrong.

Fast forward again to when our daughter was 15-months-old, I sat in the parking lot of an allergist office crying with relief and joy. We finally had a name to what had been going on with my daughter – FPIES. I found The FPIES Foundation and through them various online support groups. I found a virtual village of other parents that were leading equally ridiculous lives and that “got it.”

One of the ways I deal with stress is through art, painting, sewing, drawing, knitting, and so much more; really, I have tried my hand at anything artistic over the years, even glass blowing!

One night I was laying in bed—exhausted -- it had been a long day with a toddler and 4-month-old both reacting to something. As a mom of two children with FPIES and other various medical complexities, I am used to being exhausted, but somehow that day was especially draining.

By some miracle they had both fallen asleep relatively early. By all that was good and holy, I was going to take advantage of that and get some sleep! I lay down, but my brain wouldn’t stop working. I kept thinking about how my children had such different lives, how my family had such a different life, than almost all of my friends. I thought of all the medical debt we were not so slowly accruing, and how terrified and helpless it made me feel to be treading water emotionally and financially so much of the time, on top of the already helpless feeling that comes from seeing your child(ren) sick so much of the time. I sent out a desperate prayer (one that I had said many times before), of, “Please help me figure this out! Please help me figure out how to take care of my family!”

All of a sudden, a fully formed idea flashed in my mind of a line of illustrations featuring animals or critters with different special and rare needs. Lists and images started zipping through my brain and instead of falling asleep I was rolling over and reaching for a pad of paper.

Several hours later, I had a paper filled with ideas for different animals that I had dubbed, Awareness Critters. I also had sketched out and then painted an illustration with a mother mouse and her child carrying teal pumpkins.  With Halloween coming up and Global FPIES Day right around the corner, with allergic reactions of my children fresh in my mind, I felt inspired.

I went to bed feeling happy. It had been a long time since I had been creative and suddenly I felt like I had found a calling – even if I was the only one who ever saw the paintings.

Hesitantly, I posted my painting to my own Facebook page and then to a couple of Facebook FPIES support groups. I shared the start of my idea and waited to see how people responded. I felt like I had just jumped naked in front of a giant crowd, and honestly wondered if my art was good enough, and if anyone would like the idea . Self doubt can be exhausting!. 

I was overwhelmed by the positive response and then by requests for illustrations to feature specific issues - diabetes, vision issues, Gtubes, NG tubes, leg braces, epilepsy, and so many more. Obviously, I had hit upon an idea and a need that wasn’t being met.

I believe that everyone, especially the youngest and most vulnerable in our society, should be seen, heard, and loved for who they are and not who the media or society says they “should be”. We are all deserving of love and compassion. We all have the same basic wants, needs and even dreams.

My hope for these Awareness Critters is that they bring awareness to families and individuals struggling with Rare and hard issues.

I have big dreams for these Critters, bigger than I even want to admit out loud yet. I dream of being able to do something that I love, that can support my family and bring about positive change in the world. I dream about being able to bring awareness to the amazing children and families that face the challenging situations that special and rare needs bring daily. I know the exhaustion, terror, isolation, and joy that come with raising these amazing children. I dream that Rare won’t mean “unheard of” anymore! 

This post was written by Brittany Huston.  Brittany is the mama of four beautiful children, the two youngest have multiple complex medical conditions, including FPIES. Her family lives on a small five acre farm in the high desert of New Mexico. Brittany's days often consist of running around after small children, working on craft projects, and chasing free-range turkeys out of the family's garden. She uses her family's daily life, the joys and the struggles, and the nature that surrounds her to help inspire her art and writing.