SUPER Excited! (yes, FPIES, I know you're still here.. no need to remind me!)

****HAPPY DANCE****

Oh, yes!  YES!  I'm so excited!  Wheat is a pass!  WHEAT!

This opens up so many food doors, I'm not sure it can be properly communicated on a blog post.  You'll just have to take my word for it.  This is huge.  In the last couple of weeks, Livvy has been eating crackers!  Holy crap, my FPIES baby is eating crackers!  And (this is just waaaaaay too cool) she had her first slice of bread this past Sunday.  I found a fabulous tiny bread maker and dumped in several safe ingredients ... voila!  Bread!  

There are moments in this FPIES craziness that just strike a cord in me somewhere.  Watching Liv eat a slice of bread (and thoroughly enjoying it, by the way) was just the coolest thing... well... since sliced bread! Truth be told I was fighting back tears.  It was just such an awesome day.  Such a seemingly small thing to anybody on the outside looking in, but any FPIES family knows- something as stupendously 'normal' as a slice of bread is a major milestone.  

So I got to thinking (there I go again, I always get myself into trouble doing this!) that maybe we were outgrowing some of our sensitivity?  Just a little?  I know for a fact that having strict corn avoidance and significantly cutting down on formula (with corn syrup) has really toned down her sensitivity to react to certain things, and I think its also helped us pass the last few trials so easily.  

I mean, we really have just had a stellar last few weeks for the most part.  Its times like these that an FPIES mama could come to question herself and her interpretation on the seriousness of the situation.  

         Is it really that bad?  Am I nuts?! 

** if you know me in real life, please refrain from answering the last question....* ;)

Aaaaaand then we had today.  The FPIES princess decided that teething those pesky upper molars on a board book was a good idea.  First of all, the book shouldn't have been where it was and nobody wants to fess up to the deed... mmm hmmm...  But the kid was eating the flipping book!  GAH!  Seriously, kid??!  

We proceeded to have a pretty unhappy afternoon.  She refused to sleep.  Refused to eat.  Only wanted a bottle (yes, she's still drinking her neocate and almond milk from a bottle.  I'm not all that stressed out about switching to a cup either.  If you've got an issue with my kid drinking from a bottle... well... bite me!) and THEN the anger errupted from the other end.  A child with previously not so much as a hint of redness in her diaper area pooped and almost instantly had patches of bleeding areas that the skin just was eaten away along with raised, welted redness in other spots.  Poor baby was crying so hard for the diaper change, I thought for sure she was going to hyperventilate.  We're having a pretty restless night for sleep so far.  I know she'll be better going into tomorrow, although we'll probably have a couple more nasty diapers.  

Listen, FPIES:  I know you're still here, and very much part of our lives.  There's no need to remind us so angrily!  

Overall, I'm feeling very optimistic these days.  Livvy is thriving and doing well with food trials.  If we could just cut out these darn accidental exposures, we'd all live happily ever after.  

Well, That Was Weird.

I aspire to be a well prepared and organized super mom.  Apparently, I really missed the boat not doing Girl Scouts as a kid because I routinely fall short of this ideal.  Some days are more disorganized than others.  Ok, who am I fooling?  Most days my mama thoughts are mildly organized chaos and I'm just trying to make sure we all eat, are clothed in mostly clean shirts, and make it to the end of the day by the skin of my teeth.

The other day was very much a survive by the skin of my teeth kind of day.  We woke up late, got L to preschool late.  Livvy was in a 'mood' (I think she's getting her top molars.  ouch.) and we needed FPIES friendly groceries.  Toting my angry tot into Trader Joes with a very specific shopping list, I set about the task of grabbing our necessities.  It was about this time that it must have occurred to Liv that feeding her breakfast to the dog was a bad idea;  she was hungry and was oh-so-kind in letting me know.  While screeching like an angry pterodactyl, trying to wiggle out of the cart and yelling 'yum yum eat' over and over again I found myself searching for a snack in my bag.

See- this is where some of that scout preparedness would have been helpful.  Yup.  I forgot snacks.  All of them.  I also forgot sippy cups and bottles.

Awesome.  Not.

So was looking all around the store for something, anything, that Livvy could snack on.  My eyes stopped on a bag of puffed potato snacks that looked interesting.  I quickly read through the ingredients while Livvy was steadily going nutso.  What my mind read was: potato flour, sea salt, expeller pressed canola oil.

WOW!  She can eat these!  This is amazing!

Considering about half of the employees in Trader Joes know me by name (we are there a LOT) I didn't think I'd ruffle any feathers ripping open the bag right there in the isle.  I handed Livvy several and, like magic, she was quiet and happy as a clam.  I happily scooted over to the coffee sample bar and sucked down a few much-needed mini cups of coffee at this point.

After we checked out and got to the car Livvy was munching on the last bit of snack that she had in her hand.  Reaching in the bag to grab a few more happy-toddler-makers snacks...

My mind must have cleared with that shot of caffeinated goodness.

I looked down at the bag.  And then I saw it.

THERE WAS WHEAT FLOUR IN THE SNACKS!

I broke out in a bit of a cold sweat.  How the heck did I miss that?!  How could I let that happen?  Why was I so disorganized today??  My baby girl will be miserable because I couldn't manage to get it together!  

Settling in the next chunk of time, I was really bracing for the worst.  Like- assembling an ER bag kind of bracing.  So we waited.  And waited.  And..

Nothing.

NOTHING.

NOTHING ??!?

Now, I believe that Livvy has reacted to most new introductions on the 'first' direct ingestion because exposure to foods via breast milk served as her build-up.  Given the amount of wheat I ate while nursing, I was truly expecting a reaction.  But we had nothing.  nada.  No diarrhea, reflux, vomit... not even a hiccup.  Besides being completely blown away that we sailed through this accident I'm now thinking we should trial wheat.  It sounds crazy, right?  Grain is not really our friend.  But I can't argue with the amazing possibilities for Liv if she can have wheat, and the fact that we are limited pushes me to want to do the trial.

I really need to take some super deep breaths, because this was just so weird.  But potentially very good news!  I'm saying a prayer, crossing fingers and toes (that are shaking in my boots) and we will trail wheat.

*GULP*  Here goes nothing...

FPIES Ate My Homework.

I feel like I'm late turning in my homework.  I've been sooooo neglectful updating the blog.  SORRY!
There have been a few mamas that have contacted me after reading something here that in some way has helped them (even if in a very small way) and it truly warms my heart.  Being able to be one more story that helps put the pieces together for another FPIES mama is the reason I take time (OK, so not so much time lately.  I'm horrible!) to blog about our experiences.  Because it was FPIES mama blogs that led me to help for Livvy so early.   I feel like I have a debt to pay, and should do what I can to add one more voice to this syndrome.   So here I am.  And I PROMISE I'll be better and I'll turn in my 'homework' in a more timely fashion.

Alright.  So since figuring out our corn sensitivity, I've re-trialed several things with Livvy.  Here's the current score of safe foods:

• Pears
• Carrots (YES!  they're back! and SAFE!!!)
• Broccoli 
• White Potato
• Canola Oil
• Buckwheat products (cereal, flour, etc)
• Apples (I think)
• Blueberries
• Peaches
• Bacon
• Maple Syrup
• Celery
• and.... this is so cool... Almond Milk! 

Pretty awesome, right???

I had a moment the other day.  A real Oprah 'ah-ha' moment.  I was having a bit of a marathon food prep session for Liv's food so that I could freeze individual meals with three foods already portioned out.  Both to make daily life easier on me, but also to make it easier for my poor Hubbs to feed her.  He works so hard to support our family, but it means that he doesn't see quite as much of how to prepare her food and what is safe.  I was mid-use with my foodsaver (Best $4 ever spent at goodwill.  seriously.)  and it hit me.  Like- smacked me in the head.  I almost cried but realized it would be a sign for my girls and husband that I had completely gone coo coo for cocoa puffs.  

We have enough different foods for several different meals! 

Whoa.

I made a similar comment on my facebook page, but I'll go ahead and reiterate and expound for those of you who are just internet friends ;)

Its amazing to be 'here'.  A place where we, yes, still have to be very careful but have several safe foods.  A place where I don't have to feed my baby girl the same thing at every meal.   We are at a place where she likes to eat;  there's no fear on her part that she shouldn't eat because she equates food with feeling ill (she used to).   This is a place where we still have so far to go, but it makes my mama heart happy to know we've come this far.   Livvy is happy.  She is healthy.  She is gaining weight and growing.  Liv is fighting with her sister and she's even perfecting the toddler tantrum right on developmental schedule!  This is a place you can't even imagine when you are 'there'.  When you're holding a lifeless, gray, vomit-covered baby in your arms... or you are up for the 7th time in a night because your poor baby is in so much pain that they are only able to sleep when they literally have screamed so much that they fall asleep from sheer exhaustion.  'There' being your precious baby looking up at you with the look of desperation that they are in so much pain and they just want you to do your mommy duty and take it all away.  And you can't- you don't even know which food caused it.

Yes, it is amazing to be here.   So many families have far more complex cases of FPIES for their kids and have to go through NG and G tubes, hospital stay after hospital stay.   Two, three years without one safe food.   Our journey continues to safely nourish Livvy, but I am thankful every. single. day. that we are where we are and that she is as healthy as she is.  

And with that, I'll be back soon with another update.  I'll turn in my homework on time from now on :)