I think Santa is creepy

Yep, I said it. I’m anti-Santa. Merry Christmas!!

I’ve kind of suspected I was anti-Santa for a while now and I finally fully came around to accepting my position a few days ago. The lady who cleans our house, who is also sort of like an extended family member, gave B this adorable ornament for the little tree in his room. You flip a switch on the bottom and the bear lights up and keeps changing color. He loved it, of course, and after a few minutes of staring at it, he asked, “Mommy, is this magic?” I never knew I could have such a strong gut reaction to such an innocent question but I wanted to scream, “Hell no! It’s not magic, it’s electricity! There is no magic! Gaaa! Never think that! There is always an explanation and you should always seek one. Science!!!” I realize that might have been a teensy bit of an overreaction so I just said no, it was battery powered and had an LED inside.

When it comes to Santa, I sort of just don’t get it. I mean sure I guess it’s fun to believe. Magic! Presents! North Pole! Reindeer! But then what happens when you find out the truth? Your parents have been lying to you that whole time! What else might they have been lying about? Can you ever trust them again?

I am fervently pro-Christmas PJs.

I am fervently pro-Christmas PJs.

Also, I’m not even sure I do think it’s that fun to believe. We all grew up with it so it seems normal but under any other circumstance if someone told me that a stranger was going to sneak in my house while my children are sleeping and leave a few things behind for them, I couldn’t call 9-1-1 fast enough.

And the icing on the grinch cake: B is a major question asker. He already wants to know all the details, like why Santa gives presents to everyone and how he gets in the house, and what happens if he stays awake all night, and where do the reindeer go etc. etc., It won’t be long before he starts doing the math and wondering how he can carry all the presents and make it to everyone’s house in one night. And while I might be ok sort of dancing around the idea and saying it’s fun to believe and all that I really don’t have it in me to concoct an elaborate backstory with documentation just so it can all come crashing down for him one day. And I’m not going to tell him it’s magic.

Here is B at his school Christmas party. I think I've successfully spread all of my holiday cheer to him.

Here is B at his school Christmas party. I think I’ve successfully spread all of my holiday cheer to him.

We tried the Switch Witch for Halloween this year. The boys put out all of their soy and dairy candy over night and the Switch Witch came to swap it out for toys and candy they could eat. Granted it was more the lack of teeth that held F back this year than the allergies but it was fun to include him. The next morning when F got his brand new blue truck, B just said, “Mommy that is the truck I saw you order on your laptop. Why didn’t you get the green one? The green one was better.” Maybe he’s just not one for magic either?

Unhand me!

Unhand me!

So anyways, I guess I’ve just ruined Christmas??? Sorry. I get that I’m in the .01% minority on this one so I’m probably just missing something or being grumpy. And the one person who couldn’t disagree with me more happens to be the father of my children. He says that sometimes imaginary people are more important than real ones. So that should be a fun dichotomy for our kids.

The first time I asked my mom if Santa was real I was 3 or 4. She asked if I wanted to know the truth. (Seriously??) I’m not sure there’s any other way to answer that question other than saying yes so she told me the truth. Is THAT what ruined it for me? I never got to believe so I have to rob others of that experience also?

How old were you when you found out the truth and how traumatic was it?

A night away

We did it. We spent a night away from the kids and I did not fall to pieces and sob. My angelic and could-not-live-without-her mom watched the boys and G and I escaped to a local ski resort to celebrate our anniversary. No, we still don’t ski, but we do enjoy getting massages and unwinding in the hot tub as if we’ve had a grueling day on the slopes.

Christmassy

Christmassy

Because of that whole heart walking/almost crawling around outside of your body thing I felt this very odd mix of elation, anxiety, relief, and despair when we drove away. But I will say we had a fabulous time. We went to lunch at a Mexican restaurant where I breathed in some tortilla chip and queso scent, we had 90 minute massages which was out of this world, we sat in the rooftop hot tub while snowflakes fell, we watched old movies and ordered room service (for G, I ate my usual), and we zonked out in a king size bed with only two people.

Is that a yeti?

Is that a yeti?

 

Then after 6 hours of consecutive sleep my boobs warned me they were going to explode and I’ve been up ever since. That part sucks but there is something to be said for spending a few dark quiet hours alone- Christmas shopping and looking up allergen free recipes for my kids and waiting for my mom to wake up so I can check on my kids. These boys have eaten my brain along with my heart.

Speaking of hearts, mine has been stolen by 3 guys on my lifetime and it was pretty nice to get to hang out with its original captor. We have some big changes coming our way and there is a lot to be said for fully appreciating the calm before the storm.

Now all this relaxation is giving me anxiety. Time to take these adorable little snow monsters we found back to our adorable little monsters.

For Aunt Jorie

For Aunt Jorie

I’m blogging from my phone and I don’t really know how to make pictures look nice so sorry about that.

 

Gobble gobble all the peanuts

It’s almost Thanksgiving and everyone is talking about food, so what better time to update the Internet on all the things we are not eating this holiday season! Our pediatrician says she wants a med student to come live with us and study our kids which I don’t think is something you are supposed to want to hear from your doctor?

Anyhoo, let’s start with my easy, flexible eater (hahahahaha). B is currently dairy-free, soy-free, grain-free, coconut-free, and low-fructose, and actually doing great with that. On the assumption that the elimination of all of those foods may have reduced his discomfort, I arbitrarily reduced his medicine dose to half and he seems to still be comfortable, happy, keeps eating, all that. I like the idea of treating the cause rather than the symptoms if possible. We still don’t really know what is going on with him in general so we are seeing a pediatric GI in January, but on a daily basis he is doing well. And except for the no coconut and low fructose things, he is pretty much Pinterest’s paleo poster child and we are swimming in recipe options thanks to that trend. No, he will not be doing crossfit anytime soon, but he is getting a lot more active and strong and catching up with gross motor skills. My favorite, really not appropriate or in good taste joke, is that he was a lot easier to manage when he was underfed.

 

progress

progress

Just climbing rocks and doing other feats of strength. NBD.

Just climbing rocks and doing other feats of strength. NBD.

As for F, I don’t even know. No one knows. We’ve seen two allergists, including Utah’s FPIES “expert” and so far all the docs have been like, “Hmm that’s odd. He reacts to a whole lotta foods eh? Wow. Umm. Well, he seems to be healthy and happy so that’s great.” And that is completely true. He is probably the happiest, chunkiest little thing I’ve ever seen. Even when he’s reacting to foods, which is a lot of the time, he doesn’t seem to mind. So that is the huge, amazing silver lining. Because I feel so much crushing guilt about B, I like to think that at least F is benefiting by us being way more on top of things this time around.

"Hey guys! I'm pooping blood!"

“Hey guys! I’m pooping blood!”

He’s almost 7 months now so all the doctors are itching to start giving him food directly. Seems like a horrible idea to me but I guess it has to happen eventually so I gave it a shot. Since pears were  (<-note the past tense there, oooo foreshadowing!) one of the few foods he actually tolerated through my milk, they seemed like a natural first food for him. I think we can all see where this is going. He even made this face when he ate them like, “Are you serious, Mom?” Given how few foods he can actually tolerate through me, it’s sort of a bummer that his tolerance of a food through breast milk doesn’t mean he can necessarily tolerate it directly. I definitely worry about him for the long-term, because life is sort of hard if you can’t eat food, but he really is doing fantastic for now. And, as a few people, doctors included, have rather untactfully pointed out, it doesn’t LOOK like there’s anything wrong with him.

"You said what?? Come at me bro."

“You said what?? Come at me bro.”

As for me, I am sort of a basket case about it at times. Writing down and analyzing every single thing that goes into or comes out of my kids is tedious, as is trying to analyze the mess of resultant data and come up with some sort of signal amongst the noise. It’s extra nice that all of the doctors we’ve seen so far for F have basically shrugged and said, “Yeah good look with that one. Come back in 3 months and we’ll see how you’re doing!”

People like to ask me what I’m eating, which, if anyone is curious, is currently peanuts, squash, cocoa, coconut, coffee, potatoes, and riesling. Then later they’ll be like, “Oh can you eat this salad with spinach, tomatoes, mushrooms, and onions?” Well, no, because it isn’t made of peanuts, squash, cocoa, coconut, coffee, potatoes, and riesling. I guess it’s really hard to believe for everyone, including myself and doctors, that my diet really needs to be that limited and we are all really hoping it doesn’t have to be that way forever. And we are also really really hoping that Finn can successfully eat some kind of food soon.

He has eaten glitter and grass and that little piece of his coat with no issues. Unfortunately Johnson's Naturals Baby Soap did not go as well because apparently it's derived from corn and soy, oops.

He has eaten glitter and grass and that little piece of his coat with no issues. Unfortunately Johnson’s Naturals Baby Soap did not go as well because apparently it’s derived from corn and soy, oops.

Now, since it is the season of thankfulness, let’s focus on the positive. Earning my MD from Google University has made me tritely realize just how absolutely amazing and miraculous the human body is. Sure, there are these things that are going “wrong” with my kids’ bodies but holyshityouguys there are so many things that go right every single day with so many people just to make us alive and function and it is absolutely mind-blowing. I mean take the fact that we can mush up plants and animals and magically transform them into human flesh and then grow and see and hear and walk and talk and do things. In a strange way all of this obsessing has sincerely made me so thankful for the good health that my family does have. And I completely non-sarcastically cannot wait to cook up a paleo Thanksgiving meal, that I cannot eat myself, and then relax on the couch and watch The Polar Express with my miraculous people. I’ve had a lot of great Thanksgivings but I think this will be the best one yet because now we are complete.

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Stories with Gaga

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Stories with Daddy

family

Love

Hope everyone has a Happy Thanksgiving!!!

Catching up

You know how when you haven’t talked to a friend in forever you actually just put off the call because there is too much to say and it stresses you out? No? Just me? That is how I feel right now. I’m experiencing this incredibly odd and foreign thing right now where I am awake and not only is no one touching me but no one else is awake in the house. Literally.never.happens.anymore. This is when I used to blog so I feel like I should say something but I actually can’t come up with anything. So instead I’ll share a lot of random pictures from the last however long it’s been.

We went to a (Utah!) beach

We went to a (Utah!) beach

We own a lot of chairs but this still happens. Guess that's sort of the case with beds too.

We own a lot of chairs but this still happens. Guess that’s sort of the case with beds too.

I did not have another baby but we DID finally load the pictures from F's birth.

I did not have another baby but we DID finally load the pictures from F’s birth.

A.real.firetruck.came.to.school.holy.shit

A.real.firetruck.came.to.school.holy.shit

There was a solar eclipse and we went to a party at the Natural History Museum. My nerd joy was off the charts.

There was a solar eclipse party at the Natural History Museum. My nerd joy was off the charts.

F wore his US Soccer shirt to remind everyone he is an athlete because he was afraid we were all going to get beat up wearing those stupid eclipse glasses.

F wore his US Soccer shirt to remind everyone he is an athlete because he was afraid we were all going to get beat up wearing those stupid eclipse glasses.

Typical snugglefest.

Typical snugglefest.

We are still trying to sort out all the food issues around here. The most important goal I have is to find takeout pizza that works with our new diet plan.

We are still trying to sort out all the food issues around here. The most important goal I have is to find takeout pizza that works with our new diet plan. It’s been a challenge since B isn’t supposed to have grains, dairy, or tomato sauce. So, you know, pizza.

Pumpkin carving team.

Pumpkin carving team.

I have a niece now btw and she is the cutest thing ever. She lives far away and my goal is to hold her before she's over that sort of thing.

I have a niece now btw and she is the cutest thing ever. She lives far away and my goal is to hold her before she’s over that sort of thing.

Both of my babies were born with natural eyeshadow, it's weird.

Both of my babies were born with natural eyeshadow, it’s weird.

Opa was here for Halloween! B was Daniel Tiger. Nobody tell F that he was Margaret Tiger.

Opa was here for Halloween! B was Daniel Tiger. Nobody tell F that he was Margaret Tiger.

This little nugget turned 6 months!

This little nugget turned 6 months!

It's been fascinating to watch this whole sibling bond develop. B really doesn't like to share toys or attention with F yet he can't stand to be away from him. F loves B so much that he gets full body joy when B smushes him or steals a toy. The whole thing seems totally unhealthy but is somehow adorable?

It’s been fascinating to watch this whole sibling bond develop. B really doesn’t like to share toys or attention with F yet he can’t stand to be away from him. F loves B so much that he gets full body joy when B abuses him by smushing him or stealing a toy. The whole thing seems totally unhealthy but is somehow adorable?

Time to live vicariously

I remember when G and I were fist dating and the topic of kids came up, definitely in that hypothetical I’m not talking about having kids with YOU or anything way. He said he was opposed to the idea because once you had kids your life didn’t matter anymore and it was all about theirs. I think he meant in the evolutionary sense in that you’ve passed on your genes so you’re expendable, but regardless it sounded sort of depressing.

Now I realize he was totally right, but I’m not finding it to be depressing. And that is because I, like every other suburban parent, have discovered the art of completely living through my child. Which brings me to B’s first two races.

In my defense, he is a natural runner and does it all the time on his own. He even prefers running laps at the playground to actually playing. But, still, it’s definitely time to start pressuring him to the point of completely removing any pleasure he might get from the activity.

For my birthday we did a 1000m kids trail race in Park City. I cried, it was amazing. Then this past weekend I did my first double stroller race and again found myself in embarrassing tears because it was so much fun. The fact that it was followed by a kids race in which B and F both competed did me in. I had to keep it to myself both times because nothing makes B want to do something less than knowing someone wants him to do it.

Great form

Great form

Rehashing the highs and lows of the course. Check out his medal.

Rehashing the highs and lows of the course. Check out his medal.

Ever since he caught the bug he's been taking his baby for runs in his jogging stroller.

Ever since he caught the bug he’s been taking his baby for runs in his jogging stroller.

It was a Halloween race in case you are judging my cat suit.

It was a Halloween race in case you are judging my cat suit.

My mom was even a good sport and joined in!

My mom was even a good sport and joined in! She now wonders even more why I enjoy this activity.

I don't know what he'll be into but if he approaches it with the same drive as he is approaching mobility, he will excel.

I don’t know what he’ll be into but if he approaches it with the same drive as he is approaching mobility, he will excel. Hide the food.

Maybe his area of interest will just be being a mindblowingly adorable ray of sunshine.

Maybe his area of interest will just be being a mindblowingly adorable ray of sunshine.

 

May the over-sharing continue

I have internal debates a lot about blogging. Am I sharing too much? Will this come back to haunt my kids later, or will they love to have this chronicle of their lives? Is it a great way to keep friends and family involved plus a great outlet for me or am I setting us up for crazy stalkers and giving the middle school kids fuel with which to mock my kids? Especially now with all this medical stuff I wonder if it’s even worse to share medical information? Am I violating their privacy? Etc etc etc. Neurotic. Mom. Guilt. Blah.

I have that social media disease where I need everyone to agree that they are the cutest in history.

I have that social media disease where I need everyone to agree that they are the cutest in history.

At least for now I’ve come to the conclusion that it’s worth sharing. First of all, we really need friends and family to be informed and get it and help look out for these kids. Second of all it is absolutely not something I want them to feel bad about or hide. Also, at least in preschool, allergies are posted on the wall of the classroom so I’m probably not offering any additional info here. FPIES and EoE are also such new diagnoses and so little is known that I owe 10000% of my understanding to the Internet and other moms who have been willing to over-share, so I guess I want to cyber-pay that forward. I will, however, keep the baby poop pictures between me, the pediatrician, and the entire online FPIES Facebook group.

So, with that out of the way, let’s  play good news/bad news. Bad news first. We’ve discovered more triggers (allergens) for F. Quinoa and grape. I guess the good news there for everyone else is I can’t keep making quinoa jokes. More bad news: F has also had a few unexplained reactions recently. We’ve had company and had B’s birthday party (more on that soon!) so there have been tons of forbidden foods around. We’re now 2 for 2 on having people in town who eat normal food and F having unexplained reactions so we are cracking down. Food is only eaten at the table, we are vacuuming after every meal, and wiping everyone down. That’s been fun. We also think B may have chronic FPIES to a few more foods and are now doing the whole food diary thing, but let’s not drag everyone down any further right now.

Ha! Corn with butter! Allergy jokes are funny.

Ha! Corn with butter! Allergy jokes are funny.

Now for some good news. B had his 3 year checkup yesterday and has jumped 10 weight percentiles in the past 3 months after going on reflux medicine (PPIs). He started falling off his curve at 15 months and has been dropping or holding steady until now, so this is huge news. This EoE thing is even more confusing than FPIES and I know even less about it, so I’m also just going to dance around that for now. We are happy he’s eating!

He fixed me a hot dog on his new grill and then immediately removed it from the bun, explaining that is the shell and we don't eat that part. (Buns are full of dairy and soy and blah blah so in his experience this is true.)

He fixed me a hot dog on his new grill and then immediately removed it from the bun, explaining that is the shell and we don’t eat that part. (Buns are full of dairy and soy and blah blah so in his experience this is true.)

Maybe it’s good news or just news, but everyone at the pediatrician’s office knows our entire family by name now and I’m pretty sure whenever I book an appointment they go ahead and just reserve 2 hours for me now.

If you want to spread awareness, please purchase this thong and run through your neighborhood wearing nothing else. Thanks.

If you want to spread awareness, please purchase this thong and run through your neighborhood wearing nothing else. Thanks.

K, promise the next post will be about something other than medical issues because it’s really not the most important thing in my life, that would be how awesome these kids are so I should talk about that more.

My B is 3

I know I’ve been doing a lot of allergy bitching here lately, but despite all of that life has been going on. And, besides all of that, life has been good!

Tomorrow my first baby turns 3. Insert here all of the cliches about how fast it’s gone by. (God, that’s all I typed and I’m already crying.) I’m so stinking proud of that kid and I love him so much that I don’t even know how to put it into words so I’ll share a couple of stories.

He is absolutely delightful and cracks me up daily. This past weekend we went to the state fair and I got the pleasure of going on all the rides with him. (“Mommy is just the right size! Daddy is too big!”) Our first one was these dinky little helicopters that went around in a circle. As the ride got going I figured out you could pull this little lever and make your helicopter go up so I told B how to do it. He was giggling with glee while making us fly and then turned to the random kid who was co-piloting our copter and very seriously explained to him, “When you pull back the throttle the helicopter goes up. I am the grown up so I know what to do!” Then right back to the glee.

I really do sometimes think he is part adult in a child’s body. He understands SO much, not just helicopter engineering, but about life in general and people and feelings. He truly does have wisdom beyond his age. Although he does have an adult sized head so maybe that’s why.

You know I can’t not mention allergies so… We are really trying to figure out what other food(s) could be causing his chronic issues so I keep asking him to tell me if something hurts him. Then later when it’s obvious that he was in pain, I’ll ask him why he didn’t tell me and he says, “Mommy I didn’t want to make you feel sad so I didn’t tell you. You feel happy when I feel happy!”

It’s not a great story and the topic sucks, but it sums up my B so well. He is sometimes a challenge and I’m pretty much constantly fretting about something with him, but then out of the blue he randomly just gut punches me with all of these emotions. Here he is, practically a baby still and hurting, and he’s worried about someone else’s feelings.

All the time he asks me, “Mommy, do you feel soooooo lucky to be my mommy?” No doubt he asks because I tell him that all the time, but I’ve never spoken truer words so I’m happy to keep saying yes.

That was a lot of all over the place rambling, but what I really meant to say was, Happy birthday B!! Let’s eat some dairy-free, soy-free, gluten-free cake!

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“Look, Mommy! I’m Saturn with beautiful rings!”

We can no longer live in this world

I knew I’d pay for yesterday’s post. Pretty much as soon as I clicked “publish” we left for Whole Foods. For some odd reason, while there, I decided to read the ingredients, again, in the hemp milk I’ve been buying for B for the past 2 years. Recently there has been an uprising about the use of carrageenan in alternative milks. I don’t know why, but the battle cry is something to the effect of, “We’re all gonna die!!!” So, thanks to consumer activism (USA! USA!) manufacturers are now removing it from hemp milk, almond milk, etc. Great! Well, guess what they’re replacing it with. RICE!!! Brown Rice Syrup to be specific. F is allergic to rice. FFFFFFFFF. (Get it?)

Don't worry fellow pearl-clutchers, F didn't actually ride up there precariously balanced. He got his own cart.

Don’t worry fellow pearl-clutchers, F didn’t actually ride up there precariously balanced. He got his own cart.

In theory it’s fine for now because it’s B who drinks the hemp milk and not F. But after pondering a family eating strategy and carefully observing B eat for a while, it’s clear to me that I can’t regularly give B things that F can’t have. He drops food everywhere, spills his drinks, smears food on his face and then wipes it off with his sleeve, dribbles things down his shirt, crams food into the far corners of his booster seat and high chair and little chair and wherever else he can manage. And this is with good behavior when he’s not throwing things every which way. Then he runs over to his little brother and smothers him with love. He smushes his face against F’s, has his hands all over him, and just generally and adorably shares every last particle of his being and his lunch.

B is eating like a tiger here, he says. In his tiger cave with his face smushed into his food.

B is eating like a tiger here, he says. In his tiger cave with his face smushed into his food.

I really really really don’t want to have to confine B, then change his clothes and wipe him down, and immediately wipe every surface he touched then sweep and mop the floor for every meal and snack. My goal is to get him to eat not to make it miserable. I also will not and cannot discourage brotherly love so long may the (gentle) face smushing continue.

There will have to be exceptions, because F is allergic to everything, but overall I can’t regularly give B one of the things that F is majorly reactive to, especially mixed into something he’s used to having multiple times a day and carrying around the house with him freely. Hemp milk, however, has been one of his nutritional mainstays. It’s full of healthy fats and blah blah, plus even when he’s on an eating strike he will always drink it. So I can’t get rid of it. For now Silk Almond Milk is rice-free and I bought some hemp protein powder to mix into it to bump up the nutritionals.

The contraband has been marked and will be sent to school. There is something going on with WordPress that randomly rotates pics and I don't care enough to fix it.

The contraband has been marked and will be sent to school. There is something going on with WordPress that randomly rotates pics and I don’t care enough to fix it.

As my friend was texting me a recipe for homemade almond milk yesterday, “just in case”, I was actually wondering at what point we will just up and move to a ranch in the middle of nowhere and live off the land. If Silk adds rice, well, that might be the tipping point for me.

When everything goes right

Inevitably the “everything going right” sentiment is the product of everything going wrong at some point, which is definitely the case here. This past weekend, although lovely in a lot of ways (state fair! Daddy home! nice weather! long run!) was also filled with a lot of things going wrong. F had one of his worst reactions yet to, wait for it…., vaccines! And B also had his worst reaction yet to, it just keeps getting better…, hypoallergenic formula that I bought for F! So let’s just leave those things there and move on.

Today is just one of those days where things are happening right. F slept until 5:15 instead of 4, which was a nice departure from his latest normal. B ate a great breakfast and was in a great mood as a result. (He is back on his meds now which means we don’t have everything sorted out after all but at least we have a patch until we figure it out and the patch keeps him feeling good and eating.) School drop off was a breeze, and a few school moms told me their families would be at B’s upcoming party.

Also, it is early Fall here which is beyond gorgeous. It’s that kind of Fall where a jacket is needed in the morning but you can wear shorts in the afternoon so it’s just perfect and without feeling the cold death grip of Winter lurking. After dropping B off, F and I went for a 5 mile stroller run where he cooed for the first 2 miles and slept for the next 3. Allergies aside, this kid is EASY and that still blows my mind.

I mean....adorable.

I mean….adorable.

Now we are enjoying an afternoon at home. F is napping and B is pretend grocery shopping in the yard, dairy-free and soy-free items only! There are still a lot of hours left in the day so I better cut this off here. Yay.

I couldn't get this pic to rotate so the streak is likely ending.

I couldn’t get this pic to rotate so the streak is likely ending.

FPIES vocabulary

Pretty much my new full time job, for the time being at least, is obsessively Googling. Well, that plus methodically going through all of our food and throwing half of it out. And then doing that again and again as we discover more problem foods. And then aimlessly wandering the grocery store aisles wondering what we will eat. But still, it’s mostly the Googling.

For maybe a month now, I’ve spent every free brain moment thinking about FPIES and every free, or even not free, hand moment searching or reading up. (Sorry fellow SLC drivers for not hitting the gas when the light turns green because I’m buried in my phone.) The one advantage to this condition/disease/whatever being so understudied is it is somewhat possible to catch yourself up and I finally feel like I’m at a point where I know a decent amount.

Although I’m well on my way to a PhD in obsessive searching from Google University, I am not a medical, or any other type, of doctor. I’m just a crazy lady who wants to help her kids and I’ve read all I can. All of this is based on my understanding of others’ understanding so it might be totally wrong. But it still represents my entire knowledge base and is essentially a book report I’ve compiled after reading the Internet from cover to cover so I thought it might be useful to someone who is new to this. Here are a few terms I’ve learned for anyone who cares:

FPIES- Stands for Food Protein Induced Entercolitis Syndrome. You pronounce it F-Pies, like pies, the food that we can’t eat.

Trigger- This is what you call a food that a kid is allergic to. Or, in other words, a food that causes a reaction. You would say B’s triggers are dairy and soy. F’s triggers are…. well, everything pretty much, but so far dairy, soy, rice, corn, egg, apple, probably oat, and probably some more.

Food trial- This is when you introduce a new food at home that your kid has never had before, either through breast milk or directly. You do it slowly and painfully, starting with a small amount, and upping the “dose” for a few days until you are sure they can tolerate it.

Oral Food Challenge- This is when you give a kid one of their known trigger foods to test if they’ve outgrown it. Typically this is done when they are several years old so odds are they might have outgrown it. It is done in a hospital setting in case the kid has a bad reaction and needs immediate medical attention. More or less you give the kid a few bites and then sit there for the next 8 or so hours waiting for the fireworks. This is something that is very far from my mind as it’s years down the road for us, but our doc is trying to find a place for us to do this that has a bed and a TV and some space to play, so that’s pretty awesome of her.

Pass- When a kid tolerates a food through a food trial or oral food challenge. It’s pretty great news.

Fail- The opposite of pass and something that sucks.

Safe food- Something that a kid can and does eat regularly without a reaction. So for example, F’s safes through breast milk are peanuts, pears, squash, potatoes, etc.

Dose dependency- Again, all of this is so understudied, but based on some research and certainly anecdotal evidence, it appears that the severity of a reaction depends on the amount of the food ingested. This is sort of a good thing in that you can sloooowly introduce a food that you’re uncertain about and in so doing hopefully avoid a really bad reaction. Whereas a bowl of rice might earn a kid a trip to the hospital, a grain of rice would hopefully “just” result in a rather unpleasant day.

Threshold- Based on the above, there seems to be a threshold for the amount of food it takes to trigger a reaction. That magic amount varies based on the different trigger foods and for each kid. Ready for the major suckfest part? The threshold can decrease with repeated exposures. So say it took me eating 2 bowls of Rice Krispies for F to vomit 4 times, next time a small handful of the cereal might produce the same results, or even worse.

Accidental exposure- This is when a kid accidentally ingests one of their triggers. Sometimes it’s a good thing! If a 3 year old with milk FPIES accidentally eats a bite of regular pizza at a birthday party, first the parents panic completely, but then if the kid doesn’t have a reaction it’s cause for a celebration and a good reason to do keep trying dairy to see if they’ve outgrown it. Now it can be bad too because of the whole decreasing threshold thing. Repeated exposure to a trigger can lower the threshold required for a reaction which is not a good thing when you have a little baby or kid who likes to eat crumbs off the floor and put everything in their mouth.

Losing a food- Sort of related to all of the above threshold, repeated exposure mumbo jumbo. This is one that blew my mind and really really blows in general. Turns out it is possible for a kid to tolerate a food through breast milk, then ingest the food themselves, have a bad reaction, and then no longer be able to tolerate that food through breast milk. So then the mom loses a food from her diet, which is probably not something she can afford to do without some heartache. A version of this also happened to us. F was tolerating corn syrup through breast milk just fine, until I did two corn trials. Now he can’t go back to tolerating corn syrup. Should be an awesome Halloween. (You know, because that is our greatest worry right now.)

TED- This is a Total Elimination Diet. It means you cut as much as you can from your diet to try to get your kid totally symptom free. If it works then you can start adding foods back in one at a time. This is what I did when I ate only potatoes, squash, bananas, pears, coconut, and peanuts. A kid can have FPIES to any food so it’s sort of a game of luck/educated guessing to pick which foods to eat. And to some degree deciding what you can survive on. Plenty of people said I was crazy for doing that which may be sort of true but I honestly felt like I had no other options. But, there is always someone who has it worse and someone who has it better, and I’ve run across a few moms who actually survived on hypoallergenic toddler formula in order to get their kid to a baseline. That is something I don’t know if I could do so those ladies earn some sort of special maternal dedication medal.

FPIES Eyes- This is when you start to look at the world like a crazy, paranoid person. Not because you are actually either of those things (somewhat debatable in my case) but because the world is all of a sudden a terrifying place. I think I’m starting to experience this. We went to the state fair this weekend and there was popcorn littered on every inch of grass. F could not be put down anywhere and I made a mental note to myself that we definitely can’t take F there once he’s crawling. Then the other day B was playing with play-doh, and by playing I mean ripping it into tiny bits and throwing it around the room. I rushed to Google the ingredients, not only to see if I needed to move F to another room, but to see if we need to rid the house of Play-doh too before F is mobile.

The Internet- Not just for cat pictures it turns out. Shannon and Sheelah, thanks for the great advice to find an FPIES Facebook group. There is one and I think they might know more than the doctors at this point.