Tag: allergies

But it’s a beautiful day.

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“What’s the weather today mom?…hot or warm?”

“Is it going to be rainy or sunny?”

“Can we go to the pool/spray park/playground/beach?” 

Would it even be summer break without a whole slew of questions before 8 am?! I swear, these girls expect me to be some sort of activity coordinator with new and exciting activities to fill every second of every day. No thank you, minions…not happening. 

In the past the solution was simple — GO OUTSIDE! 

Sending the kids out to play, spending the day in the pool or at a park. Cheap. Easy. Minimal Effort. BURNS THEIR NEVER ENDING ENERGY! Perfection. 

We have been anxiously awaiting the warm weather and have been hopeful that it would also mean the end of all sorts of nasty bugs that have kept us locked away all winter. But, what would life be without a curve-ball….especially with little L. 

Cue the apparent reactions to heat/humidity. Who knew?!?!

Now we not only have to account for food/non-food items that will cause FPIES reactions, but we also have to be aware of the heat. Rashes, breathing issues, coughing, behavior changes, GI upset…all things our little zebra has started showing symptoms of when in the heat for a few hours. It was absolutely amazing the difference in him when we finally turned on the air conditioning! No need for the nebulizer, rash almost gone, and no coughing!

So what exactly do we do to keep the Os-lings occupied this summer while attempting to limit heat and humidity exposure?! 

Like most millennial moms, I took to Pinterest for activity ideas! Finding ideas for the girls was simple…there were so many we had a hard time choosing! DONE!

However, I quickly became discouraged looking for new and interesting ideas for L. We can’t do play-doh, slime, paint, markers, chalk, etc. due to food sourced ingredients being a part of the recipes and we had to limit outdoor activities. I scrolled and although I did find ideas, it was a lot of trial and error, a lot of thinking things through and coming up with alternative approaches and substitutions. A lot of clicking on articles for “20 best activities” to find one or two before going back to my scrolling. 

Dried pasta and beans for sensory bins…nope.

Shaving cream fun…double nope. 

Corn starch in homemade chalk paint…no way.

Vinegar in science experiments…no go. 

Food coloring for colored water play…not happening. 

Playing with spice containers and small pieces…too stressful having to worry about cleaning them well! 

I realized that although L is pretty reactive and we play it safe, there were lots of other kids who were worse off. Some react to bubbles, aluminum foil, book ink and more. Before entering the terrifying world of food allergies! Did you know aluminum foil is rolled out in soy oil during production? That chalk and children’s paint may contain dairy? That markers and board book ink can contain soy? There seem to be hidden allergens all around us in forms we would never expect! As if keeping our guy safe didn’t feel stressful enough already!

So, I decided to share the list I compiled of activities for my little guy. These may be new to you or not, but they are in one place and offer fun unique “pinteresty” ideas for allergy kiddos! I know some of these materials won’t work for all allergies but it’s a start! This will be 3 parts throughout the summer, not necessarily 3 consecutive weeks, so make sure you subscribe to the blog so you don’t miss the rest! 

1) Velcro Popsicle Sticks:

I love that this one can be altered in so many ways! Matching colors, adding letters for older kiddos, or just sticking and pulling apart as L enjoyed! Super simple to do, just cut velcro pieces and stick them to the ends of the sticks (on both ends and sides).  I stuck them all together to start and he enjoyed pulling them all apart and then trying to figure out how to get them to stick back together. 

2) Laundry Basket & Tape: 

This one can easily be adapted if your kiddo can’t do tape and/or aluminum foil but for L, he needed the additional sensory component. He tends to shy away from certain textures and we are dealing with feeding aversions. Since foods are limited I try to incorporate textures in other ways whenever possible. All you need is some tape and wrap it through the holes of your laundry basket to create a web. If you’re anything like me that means dumping the clean clothes on a mountain of laundry on the couch in order to free up a basket! I used ball pit balls with some balled up aluminum foil for a new texture but anything would work! L seemed only briefly interested but my adorable goddaughter LOVED this one (shameless god mommy plug!). Try adding stuffed animals or countless other possibilities to fit your needs! 

3) Pipe-cleaners & Strainer:

I made sure to scrub the h*** out of the strainer before letting him play….but I was still a nervous wreck. He hasn’t seemed to react to small cross-contamination in the past but if your kiddo does, strainers are super cheap at a dollar store. Considering this was one of his favorite activities, I would say it’s worth it! I started with a strainer with smaller sized holes and placed all of the pipe cleaners in it myself before handing it to him.

He absolutely loved pulling them all out but it was a little too tricky for him to thread them back in so we switched to our giant pasta pot’s strainer (again SCRUBBED) which had larger holes. He is always trying to figure things out and has such intent focus on mastering new tasks so this challenge kept him busy for quite a while! 

4) Kitchen Whisk & Pom-poms:

I used a rarely used whisk that was scrubbed but I will probably buy a cheap silicone whisk for the future for L. I added small plastic party favor hopping frogs mostly out of necessity to keep the pom poms from falling out but he actually ended up enjoying those the most. They were more challenging for him to get out because the feet kept hooking on the edges. Although he liked this activity, he emptied the whisk quickly and then had little interest in it. This would probably be more entertaining for younger kiddos but I am thinking a larger silicone whisk with varying sized pom poms would be better for L. 

5) Formula Can Slots

I don’t know about you, but we always have empty formula cans lying around! I’m sure there will be more activities with these in the future! If you don’t have formula cans any plastic container or box can be used. Hands down, this was his FAVORITE! He walked around with this little can adding toys for over an hour. I started by just cutting slits in the lid and having him place popsicle sticks in. This was too easy, so we moved to pom poms which he enjoyed so much more! We also practiced taking the lid on and off (I’m sure I will regret building this skill!). He loved it so much that he carried that can around his playroom and experimented with different toys. Some fit in the slits but most didn’t and he loved the trial and error search to find things he could collect (including clumps of dog hair and dust bunnies…eek!).

I’m excited to see what other activities we can come up with for the next two parts! I’d love to hear suggestions of things you want to see adapted for your allergy kiddos too so leave a comment if you have an idea!  Don’t forget to subscribe as a follower so you don’t miss the rest of the series! 

Follow our little man’s journey on his Facebook page Living La Vida Lucca: https://www.facebook.com/Living-La-Vida-Lucca-2369903016563479/?ref=bookmarks

And all of our Os-ling adventures on Instagram @Osling_chronicles

I Choose Joy.

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This week I spiraled. 

Not quite a full tailspin, but just enough to knock me off course. 

We watch our sweet L get sick often. We go to the pediatrician often. We consult with specialists often. This is our normal. 

This week I had enough.

This week, I was angry. 

This isn’t the normal I wanted. This isn’t the normal I expected. This isn’t the normal our 3 Os-lings deserve. 

Sometimes, being told that we need frequent flier points at the pediatrician is enough comic relief to make me smile, to lighten the load of another appointment. But this week, it was almost enough to break me. 

Sometimes, being told by medical professionals that our boy is a mystery to them can be taken as a compliment when I seem to understand him so well. But this week, it was daunting. 

It seems we can’t go a week without a food reaction, fever, illness, infection or random GI upset. Since September he has faced over 20 fevers, most without known causes. Plus a slew of airway issues including pneumonia, bronchiolitis, and recurrent croup. He’s had a handful of double ear infections. He’s had food fails that lead to weeks of diarrhea and blood in his stool. He’s been diagnosed with reactive airway disorder since he is too young for an asthma diagnosis. He’s had medical testing and countless blood draws. He’s had hospital trips, multiple rounds of antibiotics, steroids and nebulizer treatments. For the rare week when I am not making the trip to the pediatrician, he seems to make up for it with double appointments the following week. Although I am always relieved when a test comes back normal, when another issue is ruled out, I can never quite take a deep breath. I can never quite shake the feeling that some crucial piece of the puzzle is being missed and there is something more we can do. It just can’t be normal for one little boy to be sick this much; to have so many systems in his tiny body work against him. Can it?

This past week I struggled. I struggled to face the fact that our lives aren’t always what we pictured for ourselves. That we have added complications that those around us may not understand. I struggled to explain our boy’s medical needs, repeatedly. I struggled with comments made even if they were with the best intentions. I try to be grateful for others who don’t “get it”, this just means they haven’t had to live it. I try to be grateful for the opportunity to educate others, but it is exhausting to rehash it all like a broken record. This week though, despite the smile painted on my face, I was bitter.

I was not okay. 

I struggled to see the silver linings. I struggled to see the blessings. All I seemed to notice was how unfair this hand we’ve been dealt can seem. 

I know in my head that as time passes, he should improve. All of the doctors have told us this and the research is there to back it up. In my heart, I dream of the day when these concerns are behind us but dread his growing up at the same time. 

So this week I chose to take action. I choose to reach out to all of his medical professionals and see what else we can do. I choose to revel in little L’s sweet smile and big brown eyes. I choose to soak in his sense of humor and vibrant personality. 

I choose joy. 

In those moments when I feel robbed for losing these precious fleeting moments to anxiety and illnesses, I will choose to be grateful that we have him to hold and love. That we are lucky enough to have this precious boy as our son.

In those moments when I want to scream into my pillow and crawl into bed in defeat, I will choose to pick myself up, put on some music and have a dance party with our 3 crazy Os-lings. 

In those moments when I feel the pull of Google and the allure of a research spiral, we will head outside to play away from screens. 

Finding the silver lining is hard. It doesn’t come naturally. When you are forced to be the medical advocate for your child, you start to only see the medical issues. This week I am choosing to see beyond that. I am choosing to take our lives, our summer, our fleeting precious time back. 

Our little L is so much more than his complex diagnoses and it’s time that our life is too. 

Silver Linings

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On this FPIES journey with our littlest Osling, the clouds can be overbearing and the silver linings scarce. Through the anxiety, analyzing, waiting, watching, documenting, traveling, prepping and planning so much is missed in day to day enjoyment.

We worry about L’s health but we also worry about our girls. Are they getting enough of us? Are they sacrificing too much because of his medical limitations? Are we missing out on moments with them, despite our best efforts, because of the all-consuming beast that is FPIES?

When we take a minute to slow down, to watch the sibling relationship that has developed since L was born, we realize how much empathy, compassion, awareness and understanding K and A have gained on this journey.

While we seek to raise awareness outside of our family, we are confronted with the harsh reality of ignorance from many. Ignorance of food allergies in general, lack of concern with learning and quite honestly, hostility surrounding changing their actions to keep others safe. While we see so much darkness in the world while dealing with our son’s condition, we are surrounded by so much light from our girls.

Who knew that at just 4 years old, A could successfully list all 13 trigger foods and all 14 safe foods L has, as well as what is on our list to trial next. Who knew that at 9 years old, K would know about cross-contamination, hidden ingredients and the danger of non-food items for L. With each diaper A asks, “is that a sick poop mom or a happy poop? Do you need your phone to take a picture for the doctor?”.

Although I wish that they didn’t have to worry about their brother’s health, I am so proud of their awareness and devotion to keeping him safe. I hope and pray that this commitment to their brother expands to others they meet throughout their lives.

That they learn about all sorts of differences, abilities, challenges, and strengths and seek to help others around them rise.

That they realize that equality and equity are different. Equity doesn’t mean that everyone gets the exact same thing, but instead that each person receives the assistance they need to create an even playing field.

That they internalize that different abilities does not mean less capabilities.

That they find ways to help others the way they help their brother.

That they are willing to make sacrifices to their convenience, for the safety and well being of others.

It’s true that FPIES has taken a lot from our family, but I choose to see all of the blessings it has opened our eyes to, all of the lessons we have learned. Those small changes our family has had to make in an effort to adapt to this new and confusing life, have set the stage for life lessons for our children. For that I am grateful.

Not being able to eat in the living room seems like a small inconvenience but it teaches them not to eat in situations where others suffer from allergies or to make substitutions in the food they chose. They are learning to make sacrifices now to help others. To empathize with those who already feel left out and have challenges to deal with themselves.

Celebrating new passed foods seems like small wins now, but that will translate to seeing each individual’s accomplishments and celebrating just as loudly for others as they do for themselves.

Keeping a watchful eye for crumbs that pose threats to their little L, will transform into looking out for others in their lives and an innate willingness to jump into action when needed.

Understanding that some foods are strictly for L and are not to be shared because his diet is so limited and frankly expensive, will eventually manifest as an understanding that giving help and necessary accommodations to those who need it is not favoritism. Instead, they recognize that having those foods for him is just as necessary as the cabinets filled with food for them. Keeping things “fair” means he gets specialized food and they celebrate that with us.

Recognizing that attention spent on their brother is not attention lost from them. As they grow this will reconfigure into seeing that their strength and ability is not lessened by helping others. Small sacrifices are in fact part of being strong and independent.

Making sacrifices when L is fighting through a reaction and having to adjust all previous plans, will become an understanding of invisible illnesses and disabilities. Understanding that sometimes, we have to adjust to support and be there for those who need us most.

I pray that these lessons follow them. That small seeds have been planted and will flourish over the years. I pray that we can continue to support our little L and become stronger as a family unit while recognizing every fleck of silver lining this journey has brought us. I pray that our daughters look back on this journey with appreciation for the early life lessons they have learned while recognizing that we always tried our hardest to give each of them what they needed. But most of all, I pray that this sibling bond, forged through years of bickering, and laughter, never falters and that they learn to help and rely on one another for the rest of their lives.

To learn more about FPIES and follow our little warrior’s story, check out his Facebook page Living La Vida Lucca: https://www.facebook.com/Living-La-Vida-Lucca-2369903016563479/?tn-str=k*F

Follow the Osling Chronicles on Instagram @osling_chronicles for all of our little Oslings’ latest adventures

This is FPIES.

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Trying to cope to get through a reaction to strawberries.

Nutramigen Formula.

Carrot.

Prunes.

Pumpkin.

Red Apples.

Avocado.

Egg.

Chicken.

Baking soda.

Salt.

Sugar.

Vanilla.

Sunflower butter.

Green peas.

Almond.

White potato.

Strawberry.

This is my 15 month old son’s entire diet.

This is my list of ingredients to use to make as many creative combinations and textures as possible.

This is what he can eat for breakfast, lunch, dinner and snacks. No additional oils, spices, or ingredients of any kind.

A grocery trip for his safes

Oats.

Rice.

Wheat.

Quinoa.

Hemp.

Peanut.

Soy.

Dairy.

Banana.

Sweet potato.

Strawberry.

Green peas.

This is the list of foods we avoid at all costs. No eating out. Very selective brands or prepackaged foods. Lots of research, calling and emailing companies and prep work for every bite my son takes. And to be honest, that’s not many. Hours spent researching brands, experimenting with recipes, prepping food. Money spent on specialty ingredients. But he’s still a toddler. And a picky toddler with food aversions at that. So…most of his food, the food we work hard to prepare, ends up on the floor for the dogs.

Packed freezer after a full day of food prep!… Most will be fed to the dogs

I recite his safe food list and trigger food list countless times to myself throughout each day. To doctors and nurses as they ask “does your child have any allergies”. To other parents I meet who ask “oh is he allergic?”. To myself as I scour ingredients and packages for anything that may hurt my son and make him violently ill.

My brain hurts.

I’m exhausted.

Constantly feeling like I’m forgetting a food on a list. So I recite them all again. 

And again. 

So many times I open the fridge, to his one little self contained drawer of “safes” and almost…for a split second reach for the fresh ripe fruit right above it. Or the shredded cheese I know would be so fun for him! I almost, ALMOST, just want to test it. What if he’s fine? What if he loves it? What if the worst is behind us?

But then reality kicks in. While yes, the worst may be behind us and yes, he may be starting to outgrow some triggers or at the very least not develop new ones, it’s not worth the risk. The horrific GI pain, the mucus and blood. The bleeding diaper rashes and screaming. The weight loss from reactions. The violent, exorcist style projectile vomiting until his body is completely drained. The risk of sending him into shock. 

Failing peanut…

So instead, I make his plate with the plain boiled chicken breast, homemade almond crackers and dehydrated apple. I stick to the safes and hope and pray that whatever food we are trialing this week is a pass.

ACTUALLY eating homemade goodies

Since there is no test yet for FPIES to determine what each child’s triggers will be, we trial foods one by one in a tedious and stressful process. Every oil, spice, additive, EVERY ingredient must be trialed.

I hope that this week will add just one more food to his diet. That we can get one step closer to a normal meal time. All the while watching, waiting, analyzing every behavior change, every hiccup, cough and diaper for a sign of a reaction.

Just one page in our binder for trials. Documenting EVERY symptoms.

The trials should only take 5 days for my son; gradually increasing the amounts over the course of the trial. You would THINK that we would have more foods then right? Every month we SHOULD be able to add about six new foods. Of course, FPIES isn’t that simple.

When he’s sick or teething….we can’t trial.

When he has a reaction we have to wait for him to get back to baseline….and then wait some more. Sometimes getting back to baseline only takes a few days, other times it takes a few weeks.

Once he’s at baseline…we wait another week to start a trial.

With normal toddler illnesses mixed in with fails, it’s easy to see how quickly time passes with no new foods added to the rotation.

The process of deciding foods to trial is just as tedious. I scour resources to see what food families he has had passes in and which he has had fails. Although there is no guarantee, it is more likely he will pass in food families he has safes in already.

Once I pick food families to focus on, I then examine options for nutritional value. Which foods will help him gain weight? Which food gets us closer to cutting his reliance on formula?

Then, I look at our family’s diet. Which foods would help make family mealtimes more of a possibility? How close would this food bring us to actually sharing a meal?

Versatility is a big component I consider as well. Which foods offer the most options? Avocado gives us an oil as well as a high fat food. Almond gives us a flour for baking etc… Since L-Os has feeding aversions this is SO important. The more textures and presentations a food offers, the more beneficial the pass would be!

So many steps just to pick a food to trial. So much prepping, analyzing, documenting, waiting and praying. Holding my breathe hoping for a smooth pass but all the while not getting my hopes up too high. The constant anxiety in the back of my head nagging at me reminding me of the worst outcome we could face but trying, and trying, and failing to stay positive. Watching our sweet boy enjoy something new and exciting, and hoping that this won’t be the last time he gets to eat it.

L-Os’ FIRST potato chip! Who knew I would be this excited to feed my toddler chips?!

Constantly wondering if we are about to poison our son with a food he won’t tolerate.

Constantly playing Russian Roulette with his body. 

This is life with FPIES.

Failing green peas…his heated stuffed animal definitely helps get through some GI pain

Follow along on our little man’s journey and learn more about FPIES at his Facebook page Living La Vida Lucca