- Page 23 of 62 -

Return to Work Trial Run

April 7, 2014 - 8:00 am | April 7, 2014 Living With Food Allergies, Living With FPIES, Our Lives, Parenting

…aka “A Weekend at the Farm”, or “30 Hours WITHOUT the Kiddos!”

A few weeks ago, Darrel suggested something that I instantly vetoed.

“Why not let your parents take the boys one night? We could actually SLEEP! And they could test out keeping both boys for when you go back to work to see if there is anything specific that they would need for when the time comes.” he said.

Um, nope.

I had two big reasons: not enough milk to “waste”, and worries about accidental exposures during a food trial.

I asked my parents anyway, because this was something that Darrel really wanted. It was also something we both really needed, and as I’ve recently decided I need to water my own roots first I found myself packing up the boys stuff for an overnight with the grandparents.

Friday at 1:00 p.m., my parents drove off with the boys, and Darrel and I took 30 hours by ourselves.

God Bless Grandparents!

The first thing I wanted to do was to take a shower. Alone. With the door closed. And no little people yelling at me.

You know what? It was boring! I hardly knew what to do with all that alone time in the shower.

It made me miss the boys.

But the after shower time made me appreciate the time alone. I did my hair, makeup and got dressed like I used to do all the time, without interruptions, without chasing little boys up and down hallways while dripping wet, and without ever saying to myself “Okay, where was I, now?”

I’ll be honest; it was a little weird being alone with Darrel at first. We’ve so rarely been alone together since Zac came along that it almost felt like a second or third date. (Isn’t that sad?)

In fact, it took about five hours – and a cheesy ’70’s song – for me to relax and realize how absolutely necessary the “no boys” time was for us.

We were waiting for something in a store, patiently listening to the music playing on the speakers. Just to be silly, I decided to belt out the chorus. Right before I started singing, I looked at Darrel. I wanted to see his face when I started acting like an idiot in public!

He wasn’t looking at me at the moment, and just as I started to sing – so did he!

We sang the chorus together and laughed. At that moment, I realized something. THIS is why I married Darrel. THIS is why we need some alone time.

THIS is fun!

For the rest of our 25 remaining hours, we were a lot more comfortable and relaxed…maybe even the most comfortable and relaxed we’ve been in years.

What did we do with all that glorious alone time? I mean, childcare on a Friday night is a big deal, right?

Well, we’re such party animals. We went to Home Depot and bought supplies to build potato cages and fix our pantry problem. We went to Walmart for a few necessities. We picked up 3 cases of potatos and a case of coffee at the health food co-op.

When we got home, we cleaned out the library/spare room and threw away HUGE quantities of trash, went through the boys toys and found two giant boxes to donate to charity, and stopped by Tractor Supply on our way to pick up the boys to get some duck feed for my parents.

Wild times, I tell ya!

We did also manage to get some good “snuggle on the couch time” while watching Season 1 of “Game of Thrones”, and slept uninterrupted for 8 hours straight.

Well, at least I did. I woke up in exactly the same position I’d fallen asleep in. Even my fingers hadn’t moved!

Darrel woke up once but went right back to sleep for another three hours.

Glorious!!

For their part, the boys had a BLAST!

When we picked them up we heard all about their fun day with Grandma and PopPop.

Jed got to sit in PopPop’s lap and “drive” the pickup truck around the farm. He helped with chores around the farm, feeding the animals and collecting eggs.

He also fell in the pond.

I knew that was going to happen eventually.

Mom rescued him from the water, and stripped a dripping wet Jed down right there on the pier. He refused to go inside, you see, until his Thomas toy train had been rescued from the pond, too.

Apparently the most traumatic part of the whole ordeal for him was the potential loss of the train he had in his hand when he fell in.

Priorities, people!

Dad rescued Thomas, and a little while later Zac grabbed Thomas, ran to the pond, and threw him back in!

Dad rescued Thomas again, and they spent the rest of their outside time keeping Zac away from toys that could be thrown in to the pond. Apparently Zac has decided that all toys and balls must be thrown in the water, now. Stinker.

Friday night Zac screamed for me for 4 hours straight. Mom finally put him in the car and went for a drive; he was asleep before the end of the driveway.

My son has a temper and an incredible stubborn streak.

The rest of the time was fine; he slept great that night, though he refused a nap Saturday afternoon.

Both boys came home with slightly red cheeks from all the sun they got playing outside, and I picked a tiny Tick off Zac when we got him home. The joys and perils of country living.

When we got to my parents to pick up the boys, Zac refused to let me out of his sight. If I went around the corner, he went with me. If I stood up, even to stretch, he stood up and watched me warily.

Yes, ladies and gentlemen, I have the world’s BIGGEST Mama’s Boy!

All told, he drank 27.5 ounces of breastmilk at Mom and Dad’s. I pumped 18.25 ounces while we were apart. Based on consumption, I’d say he’ll drink 25-30 ounces of milk a day when I go back to work.

Based on that, and the amount of milk I was able to produce to replace it, we’ll be okay for breastmilk consumption while I work for three months…if I work no more than 5 days away from home per month.

Since it takes me one day away from home to travel to work, and another day away from home to travel home from work, that means I can work 3 days a month.

We’re screwed.

We need more foods for him, but there is nothing else to trial right now. Our gardens haven’t come in yet (mine hasn’t even been planted yet!).

All we can trial on Zac now is probiotics, salt, and maple syrup. Not exactly the kind of foods that are going to fill his tummy and diminish breastmilk demand.

I have no idea what’s going to happen the next few months, but I HAVE to go back to work or our finances will sink like a rock. We’ve reached the end of every clever solution I can come up with for financial survival.

I’m glad we did the trial run, even if we lost 10 ounces of milk for it. It was good to see that the kids will be happy and well cared for at Grandma and PopPop’s, and it was good to get time alone with Darrel. We all needed this.

But knowing the expiration date for safe milk for Zac is making me more anxious about returning to work.

So, prayers, please? And if anyone has any bright ideas, I’d love to hear them!

How was your weekend? How did it work out the first time you got away with your spouse after the kids came?

__________

By the way, the photo up top is almost everything we had to send for the boys – for a whopping overnight visit! Three bags, an ice chest FILLED with food, plus Jed’s Thomas backpack of toys and Epi-pens. The Summers Family travels light, you know?

Fructose-free “French’s”-style Yellow Mustard

April 4, 2014 - 8:00 am | April 3, 2014 Condiments, Fructose Free, Fructose Malabsorption, Gluten Free, Recipes, Top 8 Allergy Free

5 Comments

Jed, as you may know, has fructose malabsorption. Trying to find foods that are safe for him is quite a challenge – particularly things like sausages, hot dogs, bacon…and condiments.

All of those things are typically chock-full of fructose, not to mention fun things like “natural flavors” and “seasonings”.

We don’t eat “mystery ingredients” if we can avoid it.

The poor thing has basically had to give up all sauces, and that’s just really crappy for me.

After all, how many of you can only convince your toddler to eat a food once it is liberally doused in a tasty sauce? Can you imagine taking away that option? How hard would it be to get them to eat?

Exactly.

I finally found a safe sausage link for Jed. Beeler’s sausage links became his absolute favorite food! He would eat 6-8 sausages at a time – no sauces necessary!

Hallelujah!

Then my food co-op changed suppliers, and their new supplier doesn’t carry Beeler’s sausages.

Emergency!!

I searched everywhere local, and couldn’t find a replacement sausage. I looked online and found nothing.

In a panic, I called Christina at Traeger Ranch to ask about her sausages.

The ones she has ready made were no good for Jed (though undoubtedly delicious) because of garlic powder. BUT, she said she could have sausages custom made with my own recipe very easily.

I just love Christina!

So I sent her a copy of the ingredients in the Beeler’s sausages and, after hearing me say that the only thing I wished was that they used a different sweetener, she made a special trip to buy maple syrup for Jed’s sausages to replace the sugar in the ingredients list.

Did I mention that I love Christina?

Anyway, the sausages finally arrived to much cheering and excitement in our household.

(Oh – little side note. Christina addressed the box to Jed, so he could see that these were for him and take “ownership” of the new sausages. How cool was that? Jed was thrilled to get his very own package!)

I cooked them up for Jed the next morning and…he didn’t like them.

Argh!

Darrel tasted the sausages and said they were very good, but didn’t taste like the Beeler’s sausages, so maybe that’s why Jed didn’t care for them.

I tried to get Jed to eat the sausages several more times, and each time he would eat a few more bites…but never managed to eat a whole sausage.

One day Darrel wistfully commented that maybe they’d be more appetizing to Jed if we could put some mustard on them.

We double-checked the single, lonely bottle of French’s mustard in our fridge and verified that it was no good for Jed.

It didn’t matter. I knew there HAD to be a way to make a mustard that was safe for Jed!

After reading a ton of mustard recipes online (really? There are that many ways to make mustard?) I combined a few recipes and came up with this: a fructose-free, “French’s”-style yellow mustard.

The verdict?

Jed started scarfing down sausages like they were air, occasionally shouting out “I love this! I just love it!”

And I did a little happy dance of joy in the kitchen.

Darrel says it doesn’t have the tartness of the original French’s mustard, but that it most definitely is a mustard – and a good one at that.

So try it for yourself. If you’re fructose-free, you get another condiment in your kitchen! If you’re not fructose intolerant, you eliminate some “natural flavorings” from your kitchen.

It’s a win either way.

Plus, it’s insanely simple:

Put all your ingredients in a sauce pan.

Dry ingredients for your mustard mixed together

Wet ingredients added and whisked together

Put the pan over medium heat and bring to a boil. Reduce the heat to a simmer, and cook for about ten more minutes. Stir it frequently so it won’t burn or clump!

Beginning to boil

It will thicken as it cooks; after about ten minutes, take it off the heat and let it rest for about a minute. Then just cover and let sit until cool.

And we have mustard!

Store it in a jar with a lid in the fridge and use it anywhere you like mustard!

In the Jar, ready to be used. Isn’t it pretty?

Keep in mind, this only makes about 1/4 of a cup (2 ounces) of mustard, so you should be able to use it pretty quickly. I don’t know how long this will keep in the fridge for, but as it is a fresh, real food item, I’d suggest checking it after a few weeks before slathering it all over your meal.

Doesn’t it look delicious? And I don’t even like mustard!

That’s some good looking mustard!

I was planning on this being a “Frugal Friday” post…but after running the numbers, it is NOT the more frugal option.

Generally speaking, homemade items are more economical than store bought; but looking on Amazon, I can buy two 30 oz. bottles of French’s mustard for $10.99, which makes it a mere 18 cents per ounce.

The mustard alone for this two ounce recipe cost me 48 cents; that’s not accounting for the other ingredients that would surely bump it up to over 55 cents per batch.

I was a little upset that I wouldn’t have a Frugal Friday post today, until it occurred to me that I DID have a Frugal Tip to share.

Sometimes, you have to decide what value to assign to things beyond just the monetary.

That single, lone jar of French’s mustard we still had in our fridge? I bought that for Jed’s first birthday party. Y’all, he’s about to turn FOUR. And it was still sitting there in my fridge.

It probably would even taste just fine, thanks to the mystery ingredients that preserve it! (Yes, I threw it away. Ew.)

I don’t know about you, but when I started to think about that a bit, I got very grossed out.

The plain ingredients to MAKE mustard are shelf stable and will be perfectly healthy to use for long periods of time (if stored properly, of course). And the final product is much healthier for my family, not even considering the fact that Jed can actually USE this product thanks to it being fructose-free!

That’s worth the extra 10 cents per ounce in my book.

So there you have it: a recipe, and a philosophy. I didn’t expect it, either!

Hope you like the mustard!

Fructose-free "French's"-style Yellow Mustard

Prep time

5 mins

Cook time

10 mins

Total time

15 mins

Make your own yellow mustard - no preservatives, no fructose, no gluten, just plain yumminess!

Author: Cradle Rocking Mama (Carrie Summers)

Recipe type: condiment, fructose-free, top 8 free

Serves: 2 ounces

Ingredients

4 T. ground mustard
3 T. vinegar
4 T. water
¼ tsp. millet flour
⅛ tsp. turmeric
pinch of salt
pinch of tapioca flour
pinch of paprika

Instructions

Put all ingredients in a sauce pan.
Whisk ingredients together and place over medium heat.
Bring to a boil, then reduce heat and simmer for about 10 minutes. Stir frequently!
Remove the pan from the heat and let sit for at least a minute.
Cover the pan and let cool completely.
Store in a lidded jar in the fridge.
Enjoy your healthy homemade mustard!

Why Mom’s Should Water Our Own Roots First

April 3, 2014 - 8:00 am | April 3, 2014 Living With Food Allergies, Living With FPIES, Natural Health, Our Lives, Parenting

2 Comments

As a Flight Attendant, I’m well-versed in the concept of “take care of yourself first, then take care of everyone else”. It’s taught to us from our first day of training on: we can’t take care of the passengers unless we’ve taken care of ourselves.

This is specifically in reference to inflight decompressions, but applies to almost everything in my job.

In case you don’t know, a decompression is when the aircraft loses pressurization, and the oxygen levels in the cabin reduce.

This usually isn’t nearly as dramatic as movies would like to portray! Usually it’s something as simple as a piece of litter accidentally wedged in the door. This prevents a good door seal, and the cabin won’t pressurize properly. As the flight progresses, hypoxia sets in.

That’s bad.

In the event of a decompression, our training says the very first thing we are to do – before we call the pilots, before we do a single thing for the passengers – is to get ourselves on oxygen. (That, by the way, is why we tell people traveling with small children or someone needing assistance to put on their oxygen mask first before assisting. You can’t help them if you’re unconscious.)

This all crossed my mind yesterday, when I realized that the fragile state of my blood sugar, thanks to my Total Elimination Diet, is an awful lot like hypoxia.

See, yesterday was one of those days of the month where a woman just wants to sit on the couch in her baggiest sweats, eat chips from the bag, speak to no one, and watch “brain candy” TV all day.

As a Mama, I don’t have that luxury…but that is most certainly all I wanted to do all day!

I was tired, y’all. I didn’t feel like doing anything. My day was spent exerting the least amount of energy on every task as possible. (You know you have those days, too!)

One thing that seemed to be the easiest thing to “let go of” was feeding myself. “Ah…I’m not that hungry,” I told myself. “I’ll wait til dinner.”

Big. Mistake.

I know my body; I know that during days like yesterday, I need smaller, more frequent meals, extra protein, and that it’s bad for me to skip any food.

But my blood sugar had already started dropping, and with it went my thinking ability.

As the day began, I only ate breakfast because I had something I could reheat. I skipped lunch and had no snacks until 3:00 p.m., when I ate the first egg I’ve eaten in over two years. (Yay!)

Each hour that passed found me less and less able to function in my home; by 5:00 p.m., I was freezing cold, sitting on the couch, asking my 3 year old to hand me the blanket, and passing out.

By the time Darrel got home from work, I’d realized what had happened and asked him to pick out what I was going to eat for dinner and please get it started for me, as I was having a hard time remembering how to do things…like peel potatos.

Yeah. It was bad.

I was shaking and queasy, and unsteady on my feet. I felt like my brain was a half a step behind everything I was trying to do, and a full step behind everything everyone ELSE was trying to do.

The thing is, it came on me so slowly, so gradually, that I didn’t see or feel it happening until I was already past the point of near collapse.

I didn’t take care of myself yesterday, and everyone in my house suffered for it.

Later in the evening, when my blood sugar had gotten back to somewhat normal and I could think again, I started to realize how the oxygen mask scenario applied to my experiences that day, and how my experiences that day applied to life as a Mama in general.

We Mama’s are amazing at taking care of our families. We put ourselves last the majority of the time, constantly thinking of the needs of our loved ones. That’s admirable, and maybe even necessary…but we have got to remember to take care of ourselves.

If you don’t water the roots of the tree, it can’t grow strong enough to support the treehouse you want to build in it. It won’t grow big enough to produce fruit. It won’t be healthy enough to change colors in the fall. It won’t be healthy enough to survive winter.

We Mama’s have got to remember to water our own roots first.

It’s not selfish. It’s the best method of taking care of our families we have. If we’re healthy and doing well, we have 100% of ourselves to GIVE.

This applies to all Mama’s, not just those of us on Elimination Diet’s for severe Food Allergies, by the way (though some of us apparently need to remember to EAT more frequently!).

My kiddos and Darrel deserve 100% of myself. When I don’t take care of myself, they get a mediocre, shell-version of myself.

That’s not good enough.

So I’m making a promise today to take better care of myself. I immediately thought of a few things I could do that would be good for me:

Get more sleep.
Eat more frequently and NOT skip meals.
Extend grace to myself when necessary.

Some of those will be easier to accomplish than others, of course. (Sleep is a fantasy for me at this point!)

But I intend to work on them, and remember to pay attention to my own health enough to keep myself at 100%. It’s the least I can do for my boys.

Leave a comment and let us know: Do you tend to put yourself last? What sorts of things do you do to “water your own roots”? What do you need to do to take better care of yourself?

Easter Baskets for Food Allergic Kids

April 2, 2014 - 10:00 am | April 2, 2014 Fructose Malabsorption, Holidays, Living With Food Allergies, Living With FPIES, Our Lives

5 Comments

Now that April is here, many Mama’s are getting their decorations up and plans made for Easter. That’s not so easy for a food allergy Mama. After all, most of what I remember as traditional Easter “stuff” from my childhood revolves around food.

Sugar eggs. Peanut butter eggs. Chocolate bunny rabbits. Jelly beans. Peeps. Hard-boiled and dyed eggs. The Easter dinner.

Many food allergy Mama’s are left trying to find ways to create an Easter basket for their kiddos that doesn’t focus on – or even involve – food, and sometimes we could use a little inspiration.

Last year I shared our Easter basket for Jed, and I decided to go ahead and do the same this year. Only this year, I’m doing it far enough ahead of the big day to give everyone time to use any of the ideas I’ve come up with!

Here’s what I’ve gathered for the kids Easter baskets this year:

Both kids are getting mini-Magna Doodlers. They love to play with these, and they’ve all but destroyed the big one Jed got for his birthday last year. So they each get a mini one in their basket.

They’re boys. These have wheels and “go”. ‘Nuff said. They each get two.

Zac is finally getting better about putting things in his mouth, so I decided to be brave and get Jed some safe-ish crayons to color with. These are supposed to be free of the known triggers for Zac, so I figure we’ll take a chance at supervised coloring for Jed.

Neither of my kids is a stuffed animal lover, by any means, but at the store Zac grabbed this bunny and hugged and hugged on it. So he’s getting an Easter bunny. Seeing him hug the bunny was so cute, I had to do it! (For me, you see. I live for moments of cute.)

Jed saw this at the store and went nuts at the idea of being able to paint an egg! I figure this will be a good “Zac’s naptime” project to do together some day.

We had to have something to put all this in for Jed, and the bucket does two things: first, he loves “Cars” and Lightning McQueen, second, he now has a bucket to play with outside. Win-win.

Zac doesn’t get a special basket. He’s really too little to care about Easter baskets, yet, anyway. So I just grabbed a basket I had sitting in the spare room to hold his goodies. And this is probably just about as decorated as they’re going to get, too. I don’t think either boy will really be into bows and cellophane.

The plastic eggs (that I didn’t want to use last year) will be filled with homemade gummy candies and homemade chocolates for Jed. (If you need to be dairy and/or fructose free, you really need to check out those recipes – you could have a safe treat for your kiddo on Easter!)

We’ll give Zac a real hard-boiled egg Easter morning, but it won’t be dyed. We can’t risk the vinegar soaking through the shell into the egg.

Oh, and the thing I’m most looking forward to? Well, I splurged a little. THIS will be coming in the mail any day now:

I can’t use the chocolates that it comes with, but the MOLD is worth every penny! I can make Jed real chocolate Easter Bunnies every year now! A good 6″ tall bunny, instead of the little baby, mini bunnies I had to make last year.

I’m SO looking forward to the look on his face when he’s presented with a chocolate Easter bunny half the size of his head!

Honestly, even without the bunny, I think the boys will enjoy their Easter baskets this year.

So check out last year’s basket ideas, and hopefully you’ll get some inspiration for (mostly) non-food Easter baskets (if you need it)!

Oh, and I think I owe someone $20.

That plastic drinking cup in last years basket that I was sure would be busted by the end of the day? It’s still in 100% perfect condition.

I have no idea how that happened. He usually breaks everything!

Share with us: what awesome things are you planning on putting in your kiddos Easter baskets?

FPIES Angels

April 1, 2014 - 9:00 am | April 1, 2014 Living With FPIES, The FPIES World

2 Comments

It’s a common complaint in the food allergy world: people don’t get it. They don’t understand, they don’t help, they don’t care.

That is true in a lot of cases, but one of the greatest joys of food allergic living is when you encounter the opposite.

You’re going about your business, being and doing what you always do to keep your child safe and BAM! You’re blind-sided by a gesture or word from someone that let’s you know: you’ve just met an angel.

These encounters inspire gratitude so deep and profound that they motivate you to pick up the pace and keep going. They are encouragement in the darkest moments, and their worth is more valuable than words can express.

Today I want to talk about some FPIES Angels I’ve met and heard of, so everyone can get a little encouragement today.

__________

A couple of weeks ago we went to visit my oldest friend in the world and take photographs of her graduating son.

I’ll admit I was nervous about traveling to someone else’s home with both boys. There were lots of ways it could have been difficult, or even downright awful.

My friend, her husband, and her son, however, were absolute FPIES Angels!

They made it so easy for us. They asked questions, made accommodations where they could, helped keep an eye on the boys to make sure they didn’t get in to anything they shouldn’t, and were, in every sense of the word, a huge relief!

We were never treated like we were a burden or an oddity. We were treated like old friends…albeit old friends with special needs.

It was a breath of fresh air, and an encouragement to consider that we may not have to be as cloistered as we have been.

__________

My parents are always FPIES Angels. They sometimes have a hard time keeping track of which boy can have which foods, and which foods the boys absolutely can’t have, but frankly, so do Darrel and I! It’s a lot to keep track of!

But from the first bloody diaper we saw with Jed 3.5 years ago, they have done everything they could to support their grandchildren.

My mom has put together entire holiday feasts that were completely safe for Jed to eat, down to the smallest side dish. They’ve changed brands of many foods in their kitchen permanently so that they will always have safe things for me and the kids and won’t accidentally give them the wrong thing.

My dad has changed the way he feeds his chickens so we could have safe eggs for Zac, and I know he’s making plans to raise other animals that could be safe for the boys.

They’re also planting a garden, and plan to grow everything corn-free and organic so my boys will be able to eat anything they can handle safely.

In a million little ways, my parents have been Food Allergy and FPIES Angels from the beginning.

__________

My in-laws didn’t jump on the FPIES and Food Allergy bandwagon from the beginning, but as time has gone on, I have to acknowledge that at least one thing they do consistently has made our lives possible: cows.

At first, it was a hard sell to convince them we needed purely grass-fed and finished meat. They really wanted to grain the cows! But they have complied, even when they thought we were crazy, and provided us with numerous grass-fed and finished cows at cost. They even deliver them to the butcher for us – and a few times have even picked up the meat for us!

We wouldn’t have made it as far as we have without their cows, and for that, I’m truly grateful.

__________

Our church, as I’ve said, isn’t a very safe place for us at the moment because of dangerous art supplies and the prevalence of food, but our church is filled with FPIES Angels nonetheless.

They took up a special donation for us before Christmas to help with our huge costs while I’m out of work, and two families donated supplies to help us enclose our front porch to make the house safer for Zac.

We’re so grateful to know that even though we can’t be there weekly, our family hasn’t been forgotten and that our church family still cares.

__________

We are blessed to know two wonderful people with children the same ages as our boys, who I’ve mentioned were amazing FPIES Angels. She put together a fund raiser that provided many diapers and some money to help us, and she and her husband donated new floors for our living room to keep the house safer for Zac. He even installed them for us! (Darrel did help, but we could not have done it alone.)

I’m so sad to share that these friends have taken a new job in another state, and are moving away. But we will never forget them, and never stop being grateful for their willingness to be FPIES Angels.

__________

I would be remiss if I didn’t mention my animal people as FPIES angels. Mark at Bug Scuffle Farms is an FPIES angel of the best kind; he didn’t know anything about FPIES but was incredibly receptive to our needs. He treats his animals with respect and care, and raises them the right way just because it’s the right thing to do.

Christina at Rolling Hills Traeger Ranch is downright amazing! Her love for her animals is clear and strong, and her concern for the people who eat her meats is touching.

They are the best example of farming transparency I’ve ever encountered; they will talk about every aspect of ranching with no double-speak or obscurity.

Christina feels so strongly about her part in helping FPIES kids eat, as a matter of fact, that she has started a fundraising campaign that will enable her to not only continue raising her animals safely, but provide free shipping for FPIES families who desperately need her meat to keep their kids alive.

I’ve seen her join message boards relevant to FPIES living so she can better understand and respond to these families needs, and I’m blown away by how much she is trying to be a fundamental part of helping struggling children find safe foods. If that’s not an FPIES Angel, I just don’t know what is!

(If you’d like to help Christina continue to help children like Zac – and the many others I know use her meat – please consider donating to her GoFundMe account! Thank you!)

__________

We have many friends who send us messages when things are rough, who tell us they’re thinking of us, and who encourage us by their interest and concern. We have friends who are supportive and encouraging of Darrel’s Photography business, partly because they want to help our family earn more money and mostly because they believe in his talent. They’re all FPIES Angels, and I want them to know that we are blessed by them.

__________

I’ve heard of some wonderful FPIES Angels on the boards, too. From the little girl who insisted her birthday party provide only safe foods for her FPIES friend to the daycare that changed all their art supplies to be trigger free for their FPIES enrollee, there are just as many FPIES Angel stories out there as there are of people who make things harder.

__________

I wish I could give all these people hugs, money, or in some way repay them for all they’ve given to us and our fellow FPIES families, but I can’t. The only thing I can do, though, is to thank them, and tell the world about these FPIES Angels! This journey would be so much harder without them!

I would really, really love it if you would leave a comment on this post about an FPIES Angel in your life! We all need encouragement sometimes, and being able to read your Angel stories will surely help someone else keep on fighting!

Who’s the biggest FPIES Angel in your life? How do you like to say thank you to your FPIES Angels?

After the Egg Break

March 31, 2014 - 8:00 am | March 31, 2014 Food Trials, FPIES Reactions, Fructose Malabsorption, Living With Food Allergies, Living With FPIES, Our Lives, Parenting

8 Comments

My poor little boys had a mildly rough time last week.

Because of the egg trial, I’ve been even more paranoid than normal about keeping the floors in my kitchen and dining room cleaned. If Zac gets a crumb, it’s not good…but if Jed gets a bit of egg, it’s an Epi-pen and ER visit – or worse. So I’ve been a tad insane since eggs came in to the picture.

Every night, my kitchen clean up now involves a thorough sweeping of the kitchen and dining room and mopping the floors completely. (That’s in addition to the frantic sweeping I do regularly all day long, by the way.)

Did I mention I hate doing floors?

I do. But I do it anyway, because the alternative is too horrific to think about.

Consequently, my floors are gorgeous…and safe for Zac to walk around on first thing in the morning!

So the last week or so, we’ve been letting Zac walk around in the kitchen and dining room when we first get up and I’m cooking breakfast. It’s perfect! Everything is as clean as it will ever be, and he finally – FINALLY – gets to be set free from his “living room cage”.

In fact, it breaks my heart, in a way. By the time Jed was 7 months old he was allowed more freedoms in our house than Zac has at 22 months.

FPIES sucks on so many different levels beyond just the food restrictions.

At any rate, last Monday we halted the egg trial for Zac for the scheduled 3 day break, with plans to resume the trial on Friday. I continued to clean the floors under my new regime because I didn’t want to get complacent, so he continued to walk around the kitchen and dining room in the morning.

Thursday morning, with no food yet served in the house, I happened to turn around from the sink to see Zac put something in his mouth.

I immediately ran to scoop it out, and when I got it I saw it was the tiniest little piece of a corn puff I’d ever seen! It was a literal crumb!

Where it came from, I don’t know; as I said, I’ve been a madwoman about cleaning the floors…but somehow, somewhere, he found a single crumb I’d missed.

He didn’t eat it, thank the Lord; it was in his mouth for all of ten seconds before I dug it out. I had a mild heart attack, hugged Zac, and thanked my lucky stars I’d turned around when I did.

Then I swept the floors again, and went back to making breakfast.

Zac ate great at breakfast Thursday morning, but after that it was all downhill. He lost all appetite! He was thirsty – VERY thirsty. He nursed an extra hour on Thursday and sucked down water from cups every chance he got. Naptime was shot, and bedtime was a pill.

Friday was very similar to Thursday afternoon. He nursed an extra two hours beyond his norm on Friday, and drank at least three full 16 ounce glasses of water. No nap, and bedtime was wretched. He wanted to sit on my lap and snuggle all day long.

Friday morning I also began eggs again. The symptoms on Thursday hadn’t yet registered as a potential mild FPIES reaction as of 7:00 a.m. on Friday, so I fed him eggs right away. He WANTED to eat them. He was excited to see eggs on his plate. He clapped his hands.

But he wouldn’t/couldn’t eat very much on Friday.

So Saturday, I was getting worried about eggs.

Then, suddenly, Saturday afternoon his appetite came back with a vengeance! He ate all 6 of the muffins we’d made in a span of about 4 hours – PLUS almost half another egg scrambled with quinoa! He went down for bedtime much easier, and nursed his normal 3.5 hours for the day.

Thank goodness for food journals, because I was doing my “glance through the week” on Saturday and remembered that corn puff on Thursday morning.

Apparently, Zac is so sensitive to corn that even having it in his mouth for ten seconds without swallowing it upset his system enough to decrease appetite, make him mildly dehydrated, and make him cranky, clingy, and low-energy!

Sunday he was fabulous! He ate two whole eggs and over two cups of quinoa! He pooped great, acted great, napped great, and went to bed great.

The corn puff definitely threw us for a loop, but Darrel and I are just about ready to call eggs a safe food!

Except…

We went outside on Sunday to clean up the garden a bit in preparation for planting. The kids ran around outside, playing while we worked, and I decided to clean out their kiddie pool. I flattened it out to start cleaning out the dead leaves and water that had accumulated over the winter.

As I dragged the hose over to spray the pool, I saw Zac bent over, drinking some stale, nasty water from a puddle in the pool! A puddle with dead leaves, dirt, and who-knows-what-all floating in it! Ew! (What is it with kids, anyway??)

Since we already know Zac has a poor relationship with “eating nature“, we’re going to give him a few more days before we absolutely declare eggs safe and move on to our next trial.

Hopefully, this time around, we won’t have any reactions to deal with.

Still, corn puffs and nasty water aside, eggs are looking really good for Zac!

As for Jed, he spent most of last week eating as much bread as he could stomach! The child was absolutely on a bread kick.

Only…he also spent many days last week telling me he hurt “in his body”, pointing to his tummy, insisting on wearing a diaper to poop, and complaining of tummy aches.

That got me thinking of the last time he did that, so I flipped through the food journal (again, thank goodness for that!) and realized it was when I fed him a double batch of Banana Muffins.

The common ingredients there? Psyllium husks and chia seeds.

The fructmal people say that both ingredients *should* be safe for fructmal, but that some folks can’t tolerate much (or any) of them.

So now I have to experiment and trial both ingredients to see which one is causing Jed’s tummy troubles.

I’m so irritated! It took me SO long to find bread recipes that he liked and that truly resembled the ‘real deal’, and now I’m probably going to lose those for him. Poor Jed just can’t catch a break!

Ugh!

So, that’s the news from our house over the last week.

How was your weekend?

Frugal Friday – Free Epi-pens

March 28, 2014 - 8:00 am | March 27, 2014 Frugal Fridays, Living With Food Allergies

4 Comments

Earlier this month, when we learned Jed is still allergic to egg, we received a new prescription for Epi-pen, Jr.’s for him.

In fact, I requested 3 packages of the Epi-pens: one for our house, one for my parents house, and one to stay in his Thomas the Train backpack that goes everywhere with him. That way, no matter where Jed is, there are at least 2 Epi-pen’s with him. If he’s home or at my parents house, he’ll have 4!

Be prepared. That’s my motto.

Only, even with insurance, Epi-pen’s aren’t cheap. We were looking at well over $100 for those worthwhile little fellas!

Altogether now: OUCH!

These little fellas are pricey!!

Not for nothing, though, do I spend many waking hours online in the Food Allergy Mama world. I knew I’d heard or read that Mylan (the company that manufactures Epi-pen) had some sort of deal going on for discounted or free co-pays for Epi-pen prescriptions.

So, prescription in hand, I hit the internet.

Most of you are also FAM’s, so you probably already know this. On the off chance that someone out there isn’t aware of this nifty little program, I knew I had to share it with you to save some serious moolah.

Mylan IS offering an Epi-pen Savings Program right now. It covers up to $100 per Epi-pen prescription** for citizens of the U.S. and its territories.

Unfortunately, it won’t help if you are on Medicare, Medicaid, TriCare, or any other federal or state health care plan.

But, if you have private insurance, get ready to do a happy dance! I got all three packages of Epi-pen, Jr.’s for Jed for ZERO out-of-pocket dollars.

Even better? This program is in effect until the end of the year, so I can use it again for refills before 12/31/2014.

Sa-weet!

If you use or need Epi-pens for yourself or your children, go HERE to fill out the form.

It’s really simple; you can print out the card, have them text or email it to you for instant gratification, or mail you a card if you’re so inclined.

Also, I can’t imagine anyone reading this is unwilling to use online access, but just in case, you can also call the company and give your information over the phone to have a card mailed to you. They can be reached at 1-800-395-3376.

You can use the card as often as you like throughout the year for as many Epi-pens as your little heart desires, but it will only work for 3 Epi-pen 2-packs per prescription. So if, say, you want one pack for at home, one for your purse, one for Grandma’s, one for pre-school, and one for Sunday School, ask your doctor for 2 separate prescriptions.

For more information about the program, read HERE.

Just take the nifty little card (whether electronic or printed) and your prescription to the pharmacist and do a little Prescription Drive-Thru Happy Dance in your car when you pick up your very expensive package without opening your wallet!**

And, as always, READ about the medications you are taking. For example, did you know that getting dizzy, feeling anxious, being confused and/or having stomach pain are now listed as symptoms of anaphylaxis? They’re learning all sorts of new things about allergies; IgE’s are not just swelling up and getting hives any more!

So that’s today’s Frugal Friday tip: keep your wallet closed and your medicine cabinet stocked with Epi-pens…just in case.

Hope that helps!

**This will only cover up to $100 per package, so the Epi-pen’s might NOT be free for you. It depends on how much your co-pay will be based on your insurance plan. You’ll shave $100 per package off the price, though, and that’s still worthy of a Prescription Drive-Thru Happy Dance. Don’t you agree?

Zac’s FPIES Meatballs

March 27, 2014 - 8:00 am | March 27, 2014 Dairy Free, Dinner, Fructose Free, Gluten Free, Parenting, Pork, Quinoa, Recipes, Soy Free

9 Comments

I have a toddler who has lately been refusing to go to sleep at night. He also refuses to play happily in the living room during the time between when his brother goes to sleep and when he is finally ready to go to sleep.

So I’ve been forced to sit in the living room for hours every night with Zac while he unwinds.

It’s nice to get some one-on-one time with him. However, after the kid’s bedtime is when I usually get the kitchen cleaned and ready for the next day, write, and get any kind of downtime.

Because of this weird sleep pattern of Zac’s, I can’t even start to do any of that until sometime between 10:00 p.m. and midnight. Which makes bedtime for ME sometime between midnight and 2:00 a.m.

Then he wakes me frequently throughout the night and both kids are up and ready to play at 7:30 a.m.

I. Am. Exhausted.

Two nights ago I tried to write this post and I seriously stared at the computer screen for about ten minutes trying to remember how I made the meatballs. After half an hour, I finally just gave up. My brain feels like mush.

Does anyone else struggle with this sort of thing? What did you find that worked? Everything I’ve read on sleep training a co-sleeping child involves weaning, which isn’t an option for us. Ugh.

Anyway, all that is to say, please offer some words of wisdom….and that’s why I didn’t have a post yesterday. Mush brain couldn’t write!

At any rate, on to today’s recipe!

These are the meatballs I made for Zac during our egg trial. He LOVES them! He’ll eat ten at a time, and that’s a win in my book!

I’m guessing these could be made egg-free, and in fact, I will probably try that soon for Jed. But for those of you with limited diets who are trialing eggs, these worked great for Zac – and will surely work well for your whole family!

Start with ground meat. We used pork, obviously. I didn’t buy ground pork, but turns out, the KitchenAid Meat Grinder does a fabulous job of grinding pork!

So either grind up or go grab some ground meat and throw it in a bowl.

Then add some quinoa flakes.

Everything but the egg…

After that, crack two eggs into the same bowl. Now would also be the time to add any optional ingredients, like spices and seasonings.

Ready to Mush!

Then mush it all together well. I suppose you could use a spoon, but I just used my hands.

And, we have mush!

Once you have a nice meat mush, start scooping out smallish pieces of meat to roll meatballs. I was aiming for about 1 1/2 inch meatballs, and they mostly wound up about that size.

Rolled and ready to bake

I decided to bake these, so I laid them out on a parchment paper lined cookie sheet. Then I threw them in the oven at 350 degrees. Since I’ve never made meatballs of any type before (I know, right? Pre-FPIES I was not very adventurous in the kitchen!) I set the timer for 15 minutes and kept checking on them until I decided they were done. In the end, it took 25 minutes to bake them completely.

Baked and ready to eat!

And there you have it! Very plain, very simple meatballs.

These could be made with beef, lamb, or any meat you have. You could throw in spices and seasonings; I’d imagine oregano and basil would be delicious in these! You could probably even add some shredded veggies for a more nutritionally complete meatball.

These freeze fabulously after they’re cooked; my next experiment is to freeze them before I cook them to see if I could “get ahead” on another food for Zac.

We just fed these to Zac plain. They’d be great in a more traditional noodles and sauce presentation, I’m sure!

Someday, little Zac, someday…I promise you will taste my spaghetti sauce!

So happy meatballing! I hope your littles like these as much as Zac did.

Oh, and my first attempt at egg-free will be to simply omit the eggs without substitution, in case anyone would like to try that before I get a chance to post about my results. Jed might not get eggs, but he’ll get all sorts of seasonings in his, so I’m sure they’ll be fabulous for him, too!

Zac's FPIES Meatballs

Prep time

10 mins

Cook time

25 mins

Total time

35 mins

Three ingredient meatballs ready to thrill your kiddos at dinnertime! Simple, tasty, and a potential make-ahead freezer meal!

Author: Cradle Rocking Mama (Carrie Summers)

Recipe type: dinner, lunch, gluten-free, fructose-free, dairy-free, allergy-friendly

Serves: 3 dozen

Ingredients

1 lb. ground meat
½ c. quinoa flakes
2 eggs
sea salt (optional)
black pepper (optional)
seasonings (optional)

Instructions

Preheat the oven to 350 degrees F.
Put the meat, quinoa flakes and eggs (and any optional ingredients) in a bowl.
Mush it together until well-blended.
Take small amounts of meat mixture and roll into 1½ inch sized balls.
Lay the balls on a parchment paper lined cookie sheet.
Bake for 20-25 minutes, until done.
Enjoy your delicious, easy meatballs!

What are your favorite additions to meatballs?

How to Help FPIES Families Without Giving A Dime

March 25, 2014 - 8:00 am | March 25, 2014 Food Trials, FPIES Reactions, Living With FPIES, The FPIES World

Just shop the way you normally shop on Amazon.com, but first, go to AmazonSmile.

AmazonSmile is a wonderful charitable program where you simply shop for your normal Amazon goodies, but by going through the program link you will be telling Amazon to “Please, give .5% of my purchase total to my favorite charity!”

How cool is that?

No muss, no fuss, no cost to you – all you have to do is make sure to select a charity one time and from then on always begin your shopping via AmazonSmile.

Plus, you get to share your generosity on Facebook and Twitter after every qualifying purchase, making you look really awesome and bringing some name recognition to your favorite charity, too.

This could NOT be easier!

Personally, I’m supporting the FPIES Foundation, but feel free to select whatever charity you would like, of course! (As long as it’s an FPIES charity, right?)

The Best FPIES Food Trial We’ve Ever Had

March 24, 2014 - 8:00 am | March 24, 2014 Food Trials, Living With FPIES

7 Comments

Today marks Day 6 of Zac’s egg trial, and all I can say is: I wish every food trial was like the last 6 days.

Zac is up to eating one to two full eggs per day, and there are absolutely NO signs of an FPIES problem at all.

Zero. Zilch. Nada. He is perfect.

We’ve had no accidental ingestions, no mucousy stool, no unexplained crankiness, no sleep disturbances, no diaper rashes, no comfort nursing, and of course, no vomiting or bloody diarrhea.

In fact, since we started eggs Zac has given us the wonderful gift of 3 nights where he slept for five or more hours at a stretch.

Three nights where I got more than 3 hours of uninterrupted sleep, folks! That’s a gift from God, right there. I haven’t slept longer than 3 hours in a row in almost 2 years.

Love it!

Since the eggs are going so well, we’re pulling them for the three day break today. We’ll resume eggs again on Friday, and if the resumption goes as well as we hope, by Thursday of next week Zac will officially have a third food!

This has been an absolute walk in the park. The last 6 days, I’ve felt almost like a “normal” Mama feeding her child a food for the first time.

Oh, I’ve been watching him like an FPIES hawk, of course; but with no evidence of anything amiss, I’ve mainly just gotten the chance to revel in the wonder of my son eating a new food.

It’s glorious!

Granted, he doesn’t care for plain eggs in any form we’ve tried so far. So I still can’t just scramble or fry up an egg for breakfast (yet – I’m sure he’ll come around eventually!).

Instead, I’ve had to make things that have egg in them – but he loves every muffin and meatball he’s been served so far!

He’s packing on weight, sleeping better, and once again, has more energy than before.

I feel like I’m floating on a cloud, and wish beyond all else in the world that every food trial could go this smoothly.

Ambiguity stinks, and most of our food trials are fraught with ambiguity. “Is it FPIES or teething? FPIES or a cold? FPIES or an ear infection? FPIES or just adjusting to a new food? FPIES or…fill in the blank.”

Please pray that the egg trial continues to go well after the break, and that all our future food trials will be as clear-cut as this!

Speaking of future food trials, our original plan was to pick back up the sunflower trial once eggs were declared “safe” or “unsafe”.

Now we’re re-thinking that plan.

What we wanted the sunflower oil for was for extra nutrition, a safe oil to fry things in, and a fat to add to an incomplete homemade formula we hoped to provide for Zac when I go back to work in May.

Yesterday Darrel pointed something out to me, though. So far, all the foods that we were planning to add to that formula are things Zac is already eating in abundance…so what’s the benefit of blending them into a drink and giving it to him?

He’s got all his teeth, he’s eating, and he’s almost two. Why, Darrel wondered, are we trying to get him hooked on a bottle now?

I didn’t really have a good answer; I think I got stuck in the search for a formula last year before my maternity leave was up and haven’t reconsidered whether a formula is called for at the present time.

There is no doubt that he does not have a nutritionally complete diet at this point. Frankly, if we could find a safe, nutritionally complete FORMULA, then I would give it to him when I go to work with no qualms. We’d deal with a bottle dependence later.

But thanks to his corn sensitivity, we’ve been incapable of finding a complete, ready-made formula for Zac to drink.

So Darrel’s point was simply, if he’s going to be slightly deficient during the days I’m at work anyway, what difference does it make if he’s chewing or drinking his nutrition?

It’s a valid point.

Considering he seems to be incapable of handling heated sunflower oil anyway, sunflower oil might not necessarily be that great a food pass for us. After all, I wanted it to be able to fry things in and to add sunbutter to baked goods like cookies and muffins. If I won’t be able to do that for non-FPIES reasons, does it make sense to waste the time on a trial for a food we can’t really use?

Especially in light of the (knock wood) success of egg: egg yolks are a fabulous fat for his diet, and with lard from pork I have something to fry and add to baked goods.

I guess my only concern is that he might get used to mostly eating his food and will start to self-wean, but Darrel reminded me that he will NOT be getting all his body needs from foods, so the minute I’m home he’s sure to clap his hands and yank at my shirt to get to the boobie milk.

There are lots of things to consider about our next steps before the egg trial ends, so we’re thinking and trying to come up with a plan. If anyone has any brilliant thoughts on the matter, feel free to share! (Darrel is leaning towards trialing a salt for Zac…any ideas on how to do that?)

In the meantime, I’ll be happily floating on a cloud, walking on sunshine, enjoying the easy-peasy egg trial we’ve been blessed with.

What was your easiest food trial? Did you feel like dancing the whole time, too?

And by the way, why is it that the easiest food trial we’ve had to date has to be the one food that could kill Jed? The irony is just killing me!

Return to Work Trial Run

Fructose-free “French’s”-style Yellow Mustard

Why Mom’s Should Water Our Own Roots First

Easter Baskets for Food Allergic Kids

FPIES Angels

I would really, really love it if you would leave a comment on this post about an FPIES Angel in your life! We all need encouragement sometimes, and being able to read your Angel stories will surely help someone else keep on fighting!

After the Egg Break

Frugal Friday – Free Epi-pens

If you use or need Epi-pens for yourself or your children, go HERE to fill out the form.

Hope that helps!

Zac’s FPIES Meatballs

How to Help FPIES Families Without Giving A Dime

Just shop the way you normally shop on Amazon.com, but first, go to AmazonSmile.

The Best FPIES Food Trial We’ve Ever Had

Things I Love

Hello!

What is FPIES?

Places I Love

Looking For Something?

Archives

The Latest

I’m Crafty