At a yoga class I attended this summer the instructor wrapped up class with a quote about most of our anxiety coming from expectations we create. I couldn’t agree with this more. Summer was a first hand look at this exact thing.

I expected summer to bring less stress and chaos. I expected to have more family time. I expected to be closing in on the end of breastfeeding as my daughter neared her first birthday. I expected to have more time for myself and to get back to running more with some time off from work this summer. I expected to be starting to plan my daughter’s 1st birthday where I expected her to playfully smash her birthday cake.  I expected her to enjoy her first taste of the good stuff while covering herself in the sugary sweet frosting.  As I should know by now, life often has other plans.  Life often doesn’t go how we expect it to.

I’ve been silent on this blog for some time too overwhelmed with life to find time for it. Not running and training “enough” to warrant writing anything. In fact I was pretty sure I was going to give this blogging thing up, my Facebook page unpublished for months now.

The other day I worked on back to school stuff for my classroom all day. Despite not feeling ready and having the usual anxiety, it feels all the more overwhelming knowing I will be juggling more than ever before. Typically this time of year means eating less healthy because we have so much to do. We might have a take and bake pizza or grab some fast food to give more time to work and our kids.  Healthy eating takes a little bit less priority. Not this year.

Our family kicked off the official start to summer in my book, Memorial Day weekend, with what we thought was a really bad stomach bug for Aria. Beginning four hours after dinner, she threw up four times with the last time seeming to be the very last contents of her stomach. She was so clammy and up all night in and out of sleep and crying out often. Multiple times I said to my husband, “I’m taking her in to the ER,” as it was the middle of the night. I was pretty sure they would tell me it was a virus and send me back though, so I gave her until 5:30 a.m. for the clammy, crying out in pain symptoms to improve or I was taking her in. The next day Aria had diarrhea, but seemed better.

We gave her a few days break from solids and by Wednesday she seemed herself again so we gave her baby oatmeal for dinner which she’d had a few times before. Two hours later she was having trouble falling asleep so I got her up and she began vomiting again. After multiple times vomiting to the point of vomiting bile and dry heaving, I knew something else was going on. During the night she nursed and seemed ok, so I felt very confused.

The next morning she had the hugest, most disgusting diaper I’ve ever changed. It was completely filled with mucas and reeked of bile. She otherwise seemed herself. The poop was so concerning I immediately called the clinic when they opened. That morning she nursed and drank breastmilk fine and had a few more diarrheas. We saw her pediatrician early that afternoon.

As most moms do when something is wrong and they want answers quick, I turned to the internet for answers.  I did some research the night before and our pediatrician diagnosed her with what I had suspected. FPIES. Food Protein-Induced Enterocolitis Syndrome. We were instructed to stop all solid foods and got a referral to a Pediatric Allergy Specialist. I felt relieved to have a diagnosis, but the more reading I did the more I realized this wasn’t really a diagnosis you want (for more info visit the FPIES Foundation website).

The day continued from there and after more diarrhea, Aria refused to nurse or take a bottle of pumped milk for hours. She went five hours without a wet diaper. I called the nurse advisor. I was told if she didn’t have a wet diaper in the next couple hours she needed to be brought in for fluids due to dehydration. An hour later she took in an ounce of milk, but Aria stopped being playful and talkative. She only wanted to sleep and still refused to drink anymore. An hour later, after seven hours with no wet diapers, she finally had a small, but wet diaper as I was packing her up to go to the ER.

Our appointment for allergy peds was set for two weeks from then. During this time she had a reaction to the Tylenol we gave her either to the dye or corn syrup ingredient. We still are not sure which and will not give her that again.

At our appointment the pediatric allergy specialist confirmed the diagnosis of FPIES.  I was instructed to remove all grains from my diet and bananas since those both triggered severe reactions. We were to trial new foods and keep a detailed record of when, what, how, etc. followed the food trials as well as keeping track of every bowel movement she had.

Summer began with a different start than we expected. Summer became learning about how to eat grain and sugar free and meal prepping.  For reference foods in the grain family include bamboo, corn, wheat (in any form), rye, barley, homily, millet, oat, popcorn, rice, sorghum, and sugar cane.

Being a teacher it shouldn’t be surprising I have a love of learning.  I love learning new information about topics of my choice.  This summer FPIES research, meal planning and “healing” my daughter consumed my life and became my passion.  I looked to people who had been through this journey before through the internet.  I read anything related that could help me create an action plan moving forward.  The tricky thing with FPIES is every case is different and it is considered a rare food allergy that is relatively new.  While there are some common trigger foods, any food can be a trigger a reaction since all foods are made of proteins (note: not the protein food group).  So where do you begin?

All this reading has led to a complete lifestyle change for my family. We had always taken probiotics although not always so consistently. That has changed. Each of us has a probiotic we take each day.  My morning coffee is now filled with collagen proteins. My soups contain my own homemade bone broths. I’m making my own yogurt in my new Instant Pot. We enjoy kefir on most days as well.  I feel like we stepped back in time and imagine life for Laura on Little House on the Prairie might have been sort of like this.  Okay, perhaps that’s hyperbole, but in today’s on the go, prepackaged, easy fix eating world it often feels like I live in a different world than my friends and family.

Meal prepping was not a foreign concept to me by any means, but meal prepping took on a whole new life this summer.  When you can’t fall back on anything pre-made you have to be organized.  When you can’t rely on eating out EVER when you don’t have a plan, you make sure you have a plan or you starve. Plan it is!

In addition to learning how to feed myself all over again, each week led to a new food trial that had to be carefully measured, timed and charted. I created and made entries in her poop journal each day. When introducing a new food, we gave the new food for several days increasing the amount each day. Each day what, the amount and the time given along with any symptoms was recorded in her food log.  We then took a few days off and retried the food. No reaction meant it was a pass. A safe food to add to her list. A reaction like her two prior and we were told to bring her to the emergency room for fluids and further treatment as the dehydration can lead to shock. We were lucky with her first two that she did ok without intervention since both reactions were severe.  We learned after the fact she should have been brought in, but we had no idea what we were dealing with at the time.

This summer as I immersed myself in everything about my daughter’s diagnosis, I saw my expectations for summer disappear. Each day was filled with all the usual requirements of being a mom to two young kids, but now I had to meal prep everything, research probiotics, and learn so much about the basic human need-eating!

I learned how to make bone broth and yogurt and kefir.  I learned where to buy things like collagen and stevia sweetened anything if I ever wanted something other than fruit to taste sweet. I learned how to make a latte I like with no sugar added or sugar cane. I learned you can buy almost nothing off the shelves in America without it containing sugar or some kind of grain product. I quickly learned that many foods you wouldn’t even expect to contain sugar or corn in some form or both.  I saw our grocery bill rise to crazy amounts to buy all the fresh foods and ingredients to try to enjoy some of the “regular” foods we enjoyed as a family on occasional such as pizza (now almond flour or cauliflower crust pizza with sugar free tomato sauce and cheese without added starches so it doesn’t stick together).

While people enjoyed the summer eats like s’mores, ice cream, popsicles, cookout food and fair food I stood by (often hungrily) and reminded myself what was really important was my daughter’s health. I drank six glasses of wine all summer and gave up all other alcohol. When your daughter is refusing all solids it makes you do whatever you can in the hopes something will help.

I delved into books about the microbiome and how altering steroids and antibiotics can be, along with our diet.  I read about gut health at least a thousand times in some format or another. All of this led to me developing my own theory as to what led us to this point.

All of her allergy related issues began after a steroid treatment she received at 2.5 months old followed by a vaccine a week later. The day after the vaccine she had her first bloody and mucas filled poop. Add on a dose of antibiotics in April and her poor gut is really out of sorts. I’m no doctor, but all signs point to a relationship between these events and her allergies. I’m not saying correlation is causation, merely that there seems to be a connection. Also, I believe vaccines are important so we are vaccinating our children, but that a child being healthy when they are given is so important. Not having a fever does not necessarily mean your child’s immune system is functioning the way it should be.

This brings me back to my point of adjusting expectations. On a recent podcast from The Minimalists they admonished the word busy because they said if you say you’re too busy you really are saying your life is so chaotic that you have no control over it.  Except that is exactly what life is like in my house.  Too crazy and chaotic to control or really dictate on most days outside of what has to be done i.e. keeping children alive, meal planning, prepping food, food trials, household chores, researching FPIES and reading about related information.  To accomplish all of the above means giving up some other things like fun with friends, running, time for myself, and time with my husband.

Something so simple as giving up grains and added sugar in reality is life changing. It means giving up convenience, going with the flow, lets stay a little later, and we’ll just grab something to eat. I also realized I gained a new perspective on healthy eating. I lost weight. I eat way better than I ever have in my entire life. I can have dairy again after all those gut healing measures. I truly believe we can have all those convenience foods, but they come at a cost-our health.

Adjusting my expectations for the summer has changed my views of food and nourishing my family forever. In a weird way it’s hard to be upset about this when I know in the long term it will be a good thing for us. I only wish I’d have come to this knowledge and thinking in another way. I used to think I ate healthy until this summer. Now I know I do.

Going grain-free had become such a part of my life I plan to share a lot more recipes and resources for anyone interested in how we eat, healthy results or our FPIES journey. Journey it will be as we learned at our last allergy peds appointment that Aria will be grain-free until age 3 or 4 when they will decide when she is ready to go in to the clinic for a food trial.

I’ve learned a lot about adjusting expectations and setting them in the first place this summer. I’ve learned a lot about what really matters this summer. I’ve also realized that my world and my family’s world has become quite different than others, and we are learning how to make life work for our family while we navigate these new waters while still trying to live life the way we want.

I expect this will be full of ups and downs, but we will adjust our expectations as we go.

Sarah