{Global} darkness turns to light

I can so vividly recall that February day in 2012 that changed our lives forever. Two weeks after our son was born, I knew something wasn’t right. He cried, and cried in agonizing pain as I coddled him as tightly as I could, wondering why this was happening? Did he have colic…whatever that even means? Was it the one glass of champagne I had drank the night before at my besties wedding? Whatever it was, in my heart of hearts, I knew something was wrong.

He did have jaundice that seemed to last longer than usual, and he wasn’t gaining back his birth weight as fast as I, or the doctors, had hoped, but other than that, he seemed like a ‘normal’ healthy boy.

Mothers intuition is no joke. I have always felt in tune to my body and prided myself in my ability to read people. Fortunately my husband, and my doctor agreed.

After several visits to the pediatrician to figure out why my son would have these crying spells that would wake him from sleep only minutes after falling asleep, why he projectile vomited, and why his poops were the colors of a mossy swamp forest, and the most sweet and rancid smelling things my olfactory system had encountered.

His pediatrician believed me that he had a calm and kind nature and that something more serious must be causing what he called, his “excruciating pain.”  He checked his poop for blood, which I could not see, and sure enough there was blood. Lots.

He told me it was most likely something I was eating and passing through in my breast milk. He told me to give up dairy and the remaining top 5 allergens. Not what I wanted to hear, but of course I did it.  Anything for my little guy.

Sadly, despite having him now being on acid blocking medication and my new elimination diet, he continued to be in pain, have blood in his stools, and not thrive.

My tenacity and his pediatricians willingness to listen to all my concerns and tears, brought us to the conclusion that something in my diet was effecting him negatively.

I then went on the top 10 elimination diet, was stricter than ever with what I ate, and he continued to still have episodes. In fact the only time he did not appear to be in pain, is when I would give him a special hydrolyzed formula to heal his gut, per the doctors request, after having a severe episode.

At 4 months, we went to the allergist who very quickly diagnosed him with FPIES. Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal tract.  What it means, is no allergy test can tell you what to avoid, but you can and will (most likely) outgrow it at a young age.

The allergist told me at the time, he had only diagnosed a handful of people with this in his entire career.

My heart immediately hurt.

My eyes, flooding with tears.

My mind swirling with thoughts. Why me? Why my son?

The questions poured. I can’t breastfeed anymore? He will have this for how long? How do we manage this once he starts solids?

The allergist admitted that he hardly knew anything about FPIES. He said he would most likely outgrow it by 18 months, and as long as he avoided the “trigger food” he would be fine. Okay. Seemed easy enough. NOT.

I remember leaving there thinking it wasn’t so bad. It sounded awful, but the little information he gave me, made it seem easily manageable and not life threatening. At least we had an answer. The worst is over. Right?

I guess in a way that is true. Half the battle is not knowing.

Sadly, so many still know nothing about FPIES. Not just friends alike, but doctors, dieticians, Gastroenterologists, etc.

Recently we had to take my son to the ER, for a nurse-maid elbow, and not one nurse or doctor there, had ever heard of FPIES. Many strides are being made to ensure awareness is raised, and now October 14th has been declared “Global FPIES Day!”

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But knowing is only half the battle.

Many days are still unknown.

We have not had the opportunity to trial every food. It seems easy enough. Just give him a new food… but its not. It is easier to stick with our 17 safe foods (25 including ingredients). Partly because he himself is adverse to trying new foods and textures, and partly because it is a inconvenience, not to mention horrifying when he has a reaction.

No one likes to see their children in pain, and imagine knowing you were the cause of it. I felt that everyday. Until he was strictly formula feed and again once solids were introduced. We trialed close to 40 things before we found 2 safe foods for him.

The gut wrenching feeling that you are making the wrong choices. Not just with food, but also as a parent.

I still cry when I think about the day he can eat cake and have “e cream” that he is always talking about. He never gets sad or begs for other peoples food, instead he looks a it fondly and says “sissy” or “mommy” or “daddy” to whomever he sees eats the particular food most often. It is adorable and sad all at the same time. Maybe a year from now he will be able to eat those things.

For now,  when you see my kid eating a {homemade} popsicle for breakfast, or potato chips for lunch and pancakes for dinner, just know it did not come without trial. I wish I didn’t have to rely on his nutrition to come from an expensive can of formula, or potatoes, but it is what it is.

Life is what you make of it. I think he thinks his life is great. Most of the time, I think his life his great.

The darkness I once felt, and some days still do, are being lightened by recent food passes, recent awareness efforts, and the support I get from his teachers, family and friends. He will out grow this. I will too.

I hope.

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Xoxo,
Magazine Mom

….doing my part to spread awareness, today and always.

Things I’ve learned (lately)

1. Did you know that buckwheat is not wheat? It is not even a “grain” at all. It is a highly nutritious seed. Who knew!? I sure didn’t until I looked at my list of “best foods to trial next” for my son, who has Food Protein Induced Enterocolitis Syndrome (FPIES) and began researching it.
Side note: Many of you might be new to my blog. If you wish to catch up from the beginning of my blogging career (ahem) you can read more about him, and our FPIES journey here.

A few months ago, his pediatric dietician told me to trial Japanese Soba noodles made with 100% buckwheat, as another option to get some great protein in his diet. I thought she was crazy. Buckwheat? Let’s just poison him now! Until I did some research. A long trip to the Co-op reading every Asian noodle label 5 times, and $9 later, I had a bag of noodles for him to trial. I thought he would be so excited to try something so different. Not so much. He really is just so happy with his 13 safe foods. It is kind of sad in a way, but makes for being at a party, or playdate much easier. He is not tempted by gold-fish and cake (anymore). Nonetheless, he was not tempted to trial the brown slippery noodle either. Plan B. I figured the best way to get him interested in a new food, is to get the same texture/shape of foods he is used to eating. So, I did some more research and found there is a buckwheat cracker.

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Of course, I had to order them. I swear, I never ordered food on Amazon or Soap.com (in this case) prior to having a child with food allergies, and now that is where I have to get almost all of his “pre-made” food, with the exception of his Trader Joe staples. Thank God for Tj’s!

Anywho, for all you Gluten-free-ers out there…now you know that buckwheat is misnomer, and there are cracker options out there. They also make a quinoa and hazelnut version. They are pretty tasty (for gluten-free, taste-free crackers) and are a good replacement for flatbread crisps for dipping, or whatever.

2.  The key to a clean house is to behave like a maid.  I know this seems like a no-brainer, but I think you would be surprised how an easy and simple routine, can really keep things clean. Every morning when ‘the boy’ comes to my bed side and tells me to “ake up! ake up!’ I reluctantly side roll out of bed. He goes into the living room to watch TV (gasp if you must), and I reenact Jennifer Lopez’s role in “Maid in Manhattan.”  Well, the cleaning parts anyway. I skip over the part where I pretend to be rich and marry a politician. Although that would have its perks. Kidding.  What I mean, is I go in everyone’s room, when appropriate, and make the bed, clean-up, open the blinds, and freshen the place up. I do this before my mandatory cup of morning coffee. I know. Crazy, right? I bet many of you probably don’t even drink home-brewed coffee. I guess for you Starbucks, Pete’s peeps, this is nothing new, well at least the functioning without coffee part.

Anywho, I call this genius cleaning act ‘turn-up.’ And yes, I do ‘turn-down’ too. Down to every toy, book, piece of trash, etc. They all get put in their rightful place prior to lights out. The kids help of course, but while they take their bath, I get it  ‘magazine worthy.’ After I am done with that, I do a whole house pick-up. I sweep, vacuum, wash every dish, etc., before I sit down to watch some Real House Wives program. Admit it. You love them. If you don’t, you probably do not have cable or you are a boy.

Another thing I learned is that laundry baskets are kind of evil. If you put the clean clothes in them, they never make their way out  to be folded. If you put the folded laundry inside them, then they never make it into their respective drawers. Now, I use them ONLY for safe passage from the garage (my filthy laundry room) to the couch. That way, my OCD brain will never allow the clothes to sit there long enough for the family to plumage their weekly outfits from the pile. Instead I fold it when the children are sleeping or when the boy is napping. However, whenever you find the time to fold the never-ending mounds of laundry that covers half of your couch (don’t worry, no one is judging) just be sure to put the folded laundry in front of their intended recipients door while they are sleeping. That way, when doing your morning turn-up, you are reminded and bothered by the clothes in the hallway like the left over food trays at the hotel, so you put them away first.

Trust me, you will thank me later.

3. It is okay to wear a swimsuit even if you are not at your ‘goal weight.‘ I seriously cringe at that phrase. Hubby knows this, and uses it whenever he can to get a rise out of me. It works. I mean, who is at their goal weight after children (A.C.) anyway? Well you could be one of those freakishly lucky biotches I have been talking about. Yes sister, I am talking about you again.
I mentioned yesterday, I did the dreaded swimsuit shopping. Even worse, I had to take the kids. My daughter wondered why I tried on ‘so many black swimsuits’ and she told me I looked beautiful in every one, but she especially loved the pink one. I ended up with the vintage inspired navy blue one. The point is, your kids don’t care what you look like. They just want to splash, swim, and have fun with you. Not a 20 pound thinner you. Just you. In all your glory. This Huffington Post article circulating Facebook today, reminded me of that.

I guess I will embrace that my legs and boobs are no longer my best assets in a swimsuit (or otherwise) and just have fun in the sun. Afterall, I do have vodka lemonades to help suppress those feelings of loss. At least I know have beautiful hair. I have my children to thank for that.
4. Friendships do change and that’s okay. It is no secret that I value friendship. I consider myself to be a great friend, a decent listener (working on this), and a glue that brings people together. Lately I am lucky to see my friends once a month, and even more lucky if I actually talk to them on the phone other than receive a text. Its okay. I am not mad about it. I don’t feel as disconnected as one would think. I guess it is just the times. A bestie of mine, Kristine, of 25 years shared a link on Facebook to this article, What Being a BFF in Your Thirties Means. I commented with, “I especially like, “We’ve traded cocktails on the beach for mimosas at baby showers.” Check. Love you too bestie! Even if we don’t chat everyday :)” Fortunately for us, we do find time the way we can now that we are in our thirties and have kids. The reality is, life changes. Friendships change. You know what? It’s okay!

Make the best of what you’ve got.

Muah to all my besties, old and new out there!

Xoxo,
Magazine Mom

Home Cooking Meal Momma

Last Friday night, was monthly mom’s night out. We all host a month throughout the year, where we can choose to host at our home or pick the restaurant. This month, my dear friend Suzanne hosted us at her beautiful home. She made us all a delicious home cooked meal, served us tantalizing basil infused lemon vodka drinks. Mmm… they were refreshing. I say, “they” because I had a few too many, stayed until 2 in the morning and am just now feeling back to ‘normal’ and it is Monday.

Needless to say, the drinks and the company were amazing.

Suzanne, Nicole and me
Suzanne, Nicole and me (looking not so cute)

So was the view from her backyard.

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We were all to bring either an appetizer or dessert of our liking.  I choose, dessert.
Lately, well since I was pregnant with ‘the girl’ (5 years ago) I could eat a cupcake everyday. Mind you, I do not. But I very well could. Since all of us mommies have some dietary restriction (I know, lame), I went to a local cupcake shop and got an array of goodies, gluten sugar-free, vegan and full of everything, things.

Truth be told, I think I ate almost all them self around midnight.

My friend Nicole, and fellow blogger, brought a simple, and super delicious appetizer. A gluten-free baguette, sliced into rounds mildly toasted with a hint of olive oil. For the dipping sauce, basil pesto in a jar from Costco.

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this one!

Easy peasy, and delicious.

Seriously. It was (is) AMAZING. So much so, that I went to Costco at the first chance I had (today) to buy it.

Really. It’s that good.

Since Nicole reminded me about boiling chicken (since I cannot touch or handle it do to an unrealistic odd phobia I developed in my teens) the other day during our Ikea playdate with our kiddos, I have been a Home Cooking Meal Momma (self-proclaimed)!

Hubby even said, “Wow, two homemade meals in a row!? Is this because you hung out with Nicole?”

Me: “Well, I guess so.”

Tonight it makes 3. Thanks to Nicole.

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I boiled some boneless skinless frozen chicken breast (somehow this is less repulsive) for 30 minutes. Give or take a few.

Afterward, I chopped it length wise then in half.

I boiled some Trader Joe’s gluten-free corn penne pasta (my favorite gluten-free brand).

Added some (half the bag) Trader Joe’s sun-dried tomatoes (Julienne cut)

Poured half of the jar (could have used the whole jar, but I am savoring it) of pesto over it all and mixed it together. You aren’t even supposed to heat the pesto. You simply bring it to room temperature for 10-15 minutes before you use it.

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It is the perfect hearty summertime pasta.

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Not too hot, and it will be fabulous cold tomorrow for lunch.

I feel obliged to say it was not kid approved in our house. In the pasta’s defense, I have an incredibly picky 5-year-old and a 2 year-old with FPIES, who can only eat 13 food/ingredients.

Instead they gorged themselves on spinach chips I made. I great tip I got from a fellow FPIES mom.

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Simply lay gobs (handfuls) of spinach on a baking sheet ( I use a drying rack for a crispier texture).

Brush with an oil of your choice or what is safe in our case, which is grape seed oil.

Sprinkle with sea salt

bake @ 350 for 10-12 minutes.

ta-da!
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Seriously, easy and so delicious!

I love them too.

I even got a big thumbs up from ‘the boy’

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They could not get enough!

Elle: “Mom, you make the best lettuce!”
Me: giggling, ” Thanks sweetie.”

It was messy, but fun to watch my whole family devour something together. Even it we all weren’t feasting on the same thing.

Enjoy.

Xoxo,
Magazine Mom

Day 2: Behind the black door ~ lurks FPIES

circle1It may come as no surprise, that things aren’t always what they seem. Much like my seemingly picture perfect door that I used for my 31 day button. I had to Photoshop {well picmonkey} the heck out of the smudge marks, and the flaws on the exterior walls of my entryway.

Like the doors and the walls leading into our house, the people living inside are not always as they appear either. No, I am not talking about me. Of course not. I am always as I appear. Disheveled and bitter during the day, completely relaxed and well put together at night.

You know what I am talking about moms.

I am referring to my son. Not a single person would ever look at him, and think that he has severe food allergies. But, he does.

He has, what is called, Food Protein-Induced Enterocolitis Syndrome (FPIES), which is an allergic reaction in the gastrointestinal system.

The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction. Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. About 75% will have acute episodes on diagnosis. The other 25% children will have more chronic symptoms, which resolve within 1 week after avoiding the food (The International Association for Food Protein Enterocolitis (IAFFPE).

My son, Harlan, experiences more of the chronic symptoms such as, mucousy and/or bloody diarrhea, horrid diaper rash (like a chemical burn), colicky behavior, and interrupted sleep.

Throughout our FPIES journey, he has trialed 40+ different foods and has failed all but 12.

Currently, his only safe foods (ingredients really) are…

safe foods

Clearly, trying to find things for him to eat proves difficult. I don’t know what we would do if he couldn’t have his special hydrolyzed protein formula (Nutramigen). That is where he gets the bulk of his protein and fats from.

He sadly basically eats the exact same foods everyday, for every meal…
~homemade muffins that I make from a recipe I found and adapted.
~he eats a variety of, pear puree, spinach, broccoli, and mango, and sometimes with his favorite millet puffs. Millet puffs are so messy, that I limit his consumption due to unsightly mess he makes and rigorous clean-up.
~Cheecha Puffs have changed my life, as well as, Jenny-O turkey hotdogs, and
~In-N-out Burger’s French fries.
~he also eats a “millet mush” I concoct with hulled millet, pear puree, spinach, broccoli and mango (and sometimes Turkey hotdogs when I am feeling really crazy)
~homemade pancakes (a recipe I got from a fellow FPIES mom…thanks, Amity)
~and pear, watermelon or mango (or all three)

until (dun, dun, dun)…

last night, when the dollar store was out of Jenny-O hotdogs (seriously, I can’t believe I buy meat products at the dollar store).  I was forced to get creative (they are the only store I can find them at).

Harlan, has never liked ground turkey in any form (texture thing, I am guessing), and I have been wanting to try to find a meatloaf recipe using his limited ingredients.

After a cursory “Google” search, I came across this one that I could totally make work.

here is the final result

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{print  it  ~ millet meatloaf}

 Good news, he LOVED it. He actually ate every last bite on his plate.
yum
Though I wish I could add a lucky “13” to the safe food list, this new recipe feels like a little victory!

I look forward to many more small victory’s with him.

He is a challenging boy, and he is lucky he is so stinkin’ adorable, or else he may have ended up on the front steps of our local fire station.

Kidding.

I think.

FPIES is just one of the many things we have ‘going on’ behind the black door.

Hope you follow along to find out more.

xoxo,
Magazine Mom