Friday, January 31, 2014

Failure is Progress (FPIES and beyond).

Somehow, eventually, if one looks hard enough, there is always a positive in every negative.  It may not seem so right away and it may not seem like the positive is worth the negative, but it's there.

I've met some wonderful parents, mostly mamas, on Myra's (our?) FPIES journey.  They've helped me come to some relieving conclusions during some low moments.  Also, hindsight is our friend.

So far, Myra's safe foods are Neocate Infant formula, peaches, coconut, and potatoes.  She has also done fine with cane sugar, salt, baking soda, cream of tartar, and citric acid.  Her suspected fails (likely fails in hindsight, but not officially trialed since her FPIES diagnosis) are soy, green beans and possibly some grains (wheat and oats). Her known fails are dairy, green beans, sweet potatoes...enter carrots.

After a couple vomiting episodes back in September, I brought Myra to her doctor and he referred us to an allergist.  Based on the vomiting after new foods and some indicators on her blood work, we both suspected food allergies.  There was a five week wait for the allergist, so while we waited, we changed our approach to solid foods and I continued to nurse (my only dietary restriction at that time being dairy as we thought she just had a dairy sensitivity).  We stopped baby led weaning and went to a much more structured four day trial for new foods.  If she didn't vomit, get hives/rashes, we called it good after day four.  She seemingly passed peaches, pears, carrots, sweet potatoes, turkey, and pineapple.  Coincidentally, she started waking more at night (five times most nights) and screaming plus refusing naps.  This was very similar to what we experienced in her early months that led to me eliminating dairy.  We didn't make any connection to the night wakings/drama because those foods are some of the least likely for IgE (traditional) food allergies.  We kept on with those foods and figured the night stuff was a phase, a developmental thing, a sleep regression, anything but food related.  The allergist appointment was mid-October and that was our first time hearing of FPIES.  Upon doing some research and connecting with FPIES families, it turns out many of the most common safe foods for "allergic babies" are the most common triggers for FPIES babies (sweet potatoes, green beans, rice and grains).  Most of this is in the post about Myra's FPIES journey, but bear with me I'm getting to my point.  When we started over with food trials after Myra's FPIES diagnosis, we chose sweet potatoes first.  It was risky since it's a common FPIES trigger, but she had had it already so we gave it a shot.  I knew the first night it was a fail, but we pushed through for three more days to be sure.  Neither Trevor nor I wanted to dismiss a food because of one bad night. 

Our sweet potato fail was very discouraging.  I had a mini meltdown about it.  We finally get a diagnosis, plan longer food trials, choose a food after being completely off solid foods for over a month, and fail.  Thanks to a fellow FPIES mama, I was able to bounce back and realize that failure is still progress.  We need failures to know what we have to absolutely avoid and with which food groups to be extra cautious (i.e. legumes or grains).  Failing a food trial also helps us see what her fail patterns look like.  Some FPIES babies don't show any signs of a fail until their 10th exposure, or until they take a break from a food then come back to it.  Some have very unique fail symptoms, or little mini symptoms that appear before the big, scary ones.  This failure wasn't a total loss.  It was progress.

At that point, we decided to get her on an amino acid based formula (Neocate Infant) to get her system to some sort of a baseline.  We gave it a couple weeks and she improved.  We chose peaches (to help with constipation thanks to the formula), then coconut (to give us healthy fats and versatility: flour, oil, manna, flakes, chips), then potatoes (to give us versatility with cooking and textures).  We chose carrots next because we wanted a vegetable that would help with constipation and we were optimistic since she had already had it.  We hoped all the craziness of September could solely be attributed to the sweet potatoes (and soy in my diet). 

We gave Myra one bite of pureed carrots at 8:00am.  She was seemingly fine all day, although her afternoon nap was pretty short.  She has been a bit stuffed up which makes drinking out of a bottle more difficult, but for the most part she drank her formula well and ate quite a bit of potatoes and peaches throughout the day.  She went to bed at 7:00 pm like usual, fell asleep right away.  She woke up (but didn't even really seem awake) at 7:30 pm whining which turned into moaning.  I gave her about 10 minutes (while I panicked and went to dramatic paranoid FPIES mom mode) and she went back to sleep.  Phew! Dodged a bullet there, right? Nope.  She woke up at 8:30 pm and did the same thing, but for longer.  I went to her, suctioned her nose (clear), and started rocking her.  She stood up in my lap, poked at my cheeks, showed me her doll, waved and said "hi! hi!"  I tried to get her to relax, but she was just wired, so I put her back in her crib.  She was quiet for about 10 minutes, then the whining and moaning started again.  Trevor came upstairs and asked if she had been like this all along and I explained what had been happening.  We both knew it was a different moan.  It's awful.  It's the sound I would expect to hear from someone who has stabbed and left for dead.  I made myself a bed on the couch, went to get her and tried to sleep with her there.  She just wanted to play, talk, jump.  Some of you may think, "she must not really be in that much pain if she snaps out of it that easily!" Wrong.  My conclusion is that she's bothered so much, she can't relax and go back to sleep.  Once we can somehow get her situated and back asleep, she will stay asleep for a few hours.  Then we start over when she wakes again.  (She slept through the night, 12 hours straight, the previous three nights.)  Back before we had a clue what was happening (dairy issues in the early months) she was very easily consoled.  No one seemed to believe something was wrong because she would quiet down and go back to sleep if I just rubbed her belly.  When it's teeth, constipation pain, or illness, she doesn't turn into playful Myra and rocking back to sleep works right away.  This is her [chronic] fail pattern.  This is progress.

Now, the timing of the fail (ingestion to fail symptoms) may not be the exact same every time.  Since she has already had carrots (and sweet potatoes), I'm not surprised we noticed the chronic fail (sleepless nights, abdomen pain, but no vomiting or diarrhea) on day one.  For a completely new food, it may take a few days or even a break then reintroduction to see these signs, but we know better what it looks like.

FPIES aside, can't this same idea be applied to most failures in life?  Failed relationships help us realize what we really want and what doesn't work.  Failed classes help us narrow our scope and find our strengths and passions.  Failed attempts at fixing things around the house teach us what doesn't work.  Failed planning (events, work stuff, budgeting) shows us what we need to do differently next time.  Failed cooking encourages us to hone our skills in the kitchen.  "Failed" medical tests tell us what needs treatment.  Failure isn't a total loss.  Failure is progress.

PS-don't roll your eyes at me just yet.  It's not all rainbows and unicorns over here.  Want to know my fail pattern?  Exhausted, lazy, crabby, coffee, poor food choices, coffee (yep, twice!), neglecting house work, and spending my entire day trying to nap.  Thankfully it doesn't last long.

Saturday, January 25, 2014

An FPIES-Friendly First Birthday Party.

Myra's birthday party was today and it went great!  A few people had to miss out for various reasons, but such is life.  We still had quite a few people come and everyone had a good time.

I was kind of stressing about the FPIES (Food Protein Induced Enterocolitis Syndrome) menu.  We made a decision a while back to only serve Myra's safe foods at the party.  We wanted to be respectful of Myra since it's likely the one day every year that it will be practical to cater to her diet for an entire event.  We wanted there to be zero stress about spilling, crumbs, people wondering what they can and can't feed her, or people needing to be extra careful with hand washing.  And we wanted to use it as an awareness piece to show people what her diet is really like and how creative we have become with food for her.  It was a new concept at first, but once we explained it people seemed to really understand.  Trevor explained it well by saying, "You wouldn't serve a sugary cake and ice cream at a diabetic kid's party, would you? This is no different." I spent the last week or two researching and practicing options with her limited safe foods (peaches, coconut, and potatoes, plus a couple "freebies" - salt, sugar, baking soda).  I made some pretty good mashed potatoes a while back, so I attempted a huge batch of them, but totally screwed up my proportions so I ended up not serving them.  I imagine Myra will eat them no problem, but they tasted very coconutty and the texture was pretty gummy.  I made a couple versions of coconut flour cake pops, but didn't end up with too many that tasted very good, so Myra just got those as her smash cake.  I topped them with whipped cream (coconut milk whipped with homemade powdered sugar-did you know powdered sugar has cornstarch or tapioca starch in it?? I put sugar in a blender with potato starch and it worked great!) and diced peaches (we can only use the canned peaches that have peaches, sugar, and water listed as the ingredients).


Myra is still iffy on some textures, a possible by-product of eliminating solids for a while, then starting again so slowly.  She mostly played around with her cake, ate a little, spit some out, but the goal was to make a mess and she accomplished that!

For the FPIES families, or anyone interested, I will include the rest of our menu at the bottom of this post.

Myra had fun opening her presents, mostly playing with the tissue paper and tags.  She loves books, so she was actually pretty patient with reading cards.

Look at this giant, pink teddy bear that says "PRINCESS" on it.  Our nephews picked it out just for Myra. LOL.
Backstory: A few months ago I visited my best friend and Myra's godmother, Angie.  We were on a "What Does The Fox Say?" kick and listened to it all weekend with her son, Collin.  Myra got the hang of it and, on the way home, started mimicking it.  It was pretty funny.

So, naturally, Grandma Christy picked up this book for her birthday.
She looks so big!
Here are a couple photos from her actual birthday.  Grandpa Rich came to visit and Myra opened a present my mom sent.
It was a great birthday and party day!  Myra is exhausted and went to bed at 6 tonight.  

For those interested, here's what we served using Myra's safe foods (peaches, coconut, potatoes) and "freebies" (these foods are generally safe, but it's a parents' judgement call to actually trial them or not) salt, sugar, baking soda, cream of tartar.

I made peach ice cream that we didn't end up serving because we forgot about it.
2 cans coconut milk, 1/2 cup sugar, dash of salt, and diced peaches.  I mixed the coconut milk, sugar, and salt then let it chill in the fridge for about an hour.  I put it in the ice cream maker, added the peaches, and in about 20 minutes had peach ice cream!  If vanilla (or some similar flavor) is safe for you, it may be a good addition.  It probably would have been fine for us, but didn't want to risk it since we were almost finishing another food trial at the time. 

CheeChas (Original, Gluten Free variety) were the easiest item on the menu.  Order online, open bag.  Also easy but mostly for Myra were freeze dried peaches.

Baked Potato Chips just might be our new favorite snack.  I used my new mandolin slicer to cut thick slices of potatoes then put them in a gallon sized plastic bag.  I melted coconut oil (it's solid at room temperature) and poured it into the bag, zipped shut, and shook the bag to coat all the potatoes.  I laid parchment paper on a cookie sheet (my new favorite non-stick trick) then laid the potatoes on the sheet in a single layer.  I sprinkled a little salt on top then baked at 350 checking every 10-15 minutes.  I think it ended up being about 40-45 minutes, just when they started to brown.  They were so yummy!

Peaches & Cream for dessert.  Canned peaches topped with homemade whipped cream.  One can of coconut milk (the whole fat kind, not light) whipped with powdered sugar.  I made my own since store bought contains cornstarch or potato starch.  I blended regular sugar in the blender then added potato starch little by little until it was the consistency I wanted.  I chilled the mixing bowl and beaters in the garage (thank you, Minnesota winter).  I should have chilled the coconut milk since it was warm (I had to soak the can in warm water before opening it otherwise it comes out in clumps because it's so think).  It turned out more like pudding than whipped cream but no one complained.

Coconut Flour Cake Pops for Myra's smash cake. This is the recipe I was given, then I will explain how I modified it.
1 1/2 cups coconut flour 
1 tsp. baking soda 
1 tsp. baking powder 
1/2 tsp. salt 
3/4cups apple sauce (do not add water when pureeing) 
3/4 cup sugar 
1/4cup finely chopped apples 
5 tbsp. coconut oil, melted

Topping (optional): 

1/3 cup coconut sugar 
2 tbsp. coconut flour 
1 tbsp. coconut oil, still in solid form

In a large bowl, mix together flour, baking soda, baking powder, and salt. In another bowl, beat together apple sauce, sugar, diced apples, and oil. Stir wet ingredients into dry ingredients until just moistened. Spoon batter into muffin cups. In a small bowl, mix together coconut sugar, flour. Cut in solid oil until mixture is coarse crumbs. Generously sprinkle topping over muffins. Bake at 375 for 20 minutes or until a toothpick comes out clean and allow to cool before eating. Yields 12 muffins.

I cut the recipe in half and did not make the topping.  I used extra coconut oil and a baking powder substitute since I didn't have time to get my hands on any made with potato starch instead of corn starch (substitution was 2 parts baking soda, 1 part potato starch, 1 part cream of tartar). Instead of apple sauce, I used pureed peaches and I skipped the finely chopped apples.  I think they would have stuck together better with applesauce than they did with peaches.  So, I added a little whole coconut milk (I had a case of Native Forest brand) which helped.  I'm still learning with coconut flour, but the batter will seem dry-it will be more like cookie dough than cupcake batter.  I just needed it moist enough so it would stay together in the pan.  (My first batch completely crumbled apart, but I let it dry out on a plate and Myra messed around with it for days, similar to puffs snacks.)  I put them into a donut hole/cake pop maker and just kept checking until they appeared done, about 8 minutes if I recall correctly.  Also, these didn't rise like I would expect of traditional cake mix, so I started putting them in there as an actual ball shape.  I will continue to mess around with these for sure!  Coconut flour will be much easier to use if we can get eggs as a pass!

Tuesday, January 21, 2014


On the eve of Myra's first birthday, I can't help but reflect on the last year.  I will say I'm left speechless, but that's not entirely true since I'm about to keep writing.

I've lived through many "one years" already, most notably in relation to deployments.  One year til he's (or she' you, Michelle!) home, one year til they leave again, you get the picture.  One year til I graduate high school, college.  This one is different.  There's something so tangible about it.  One year ago tonight, I was bouncing on a yoga ball, walking on the treadmill with Rowdy, and painting trim as we scrambled to finish our  basement before this new little person decided she was ready to meet us.  At my appointment that day, I had a membrane sweep and we had our fingers crossed it would work...although I was skeptical to say the least.  I was entering a world of unknowns trusting my mama instincts would kick in when I needed them.  I was FREAKING OUT about how I would know when contractions were real (versus Braxton Hicks, or practice contractions) and everyone (literally everyone) told me, "you'll know." And I did.  I waited in bed timing them on my iPod app from about 2:30am until 4:30am when I woke Trevor up.  I won't go into the rest of the birth story, if you want to read it in all its glory, click here.

Maybe I am speechless.  I'm literally aimlessly clicking around thinking how I could wrap up this last year into words.  We've gone through many of the struggles, learning curves, growing pains, joys, cRaZaY moments, and excitement that most first time parents do.  We've had unique struggles with nursing (ok maybe that one isn't so unique), a yeast infection and chicken pox (ok, maybe not so unique there either, at least not the yeast infection), reflecting on past pregnancy loss as the due dates were 360 days apart (hmm... okay so pregnancy loss is pretty darn common, too, but each of these experiences have been unique because they're ours), and most notably our journey to Myra's FPIES diagnosis. We've had a LOT of fun this year getting to know our fun (have I said fun yet?), happy, personable, smart, beautiful little girl.  Not only did she make me a mama, and make Trevor a daddy, she led me to some absolutely phenomenal people.  We have made so many friends through ECFE, our babywearing group, an online due date club (my "January baby" group), fellow FPIES families, and even connecting more with friends and family as our families grow together. 

I feel like I should be able to go on and on and get all mushy gushy about motherhood and the lessons I've learned, patience, priorities, appreciating the small things (sleep? I'd consider that a big thing), the realization that there is no such thing as a "normal" baby, but I honestly don't know how to put it into words (I know, hard to believe).  I can totally relate to the saying that there is no way to be a perfect parent and million ways to be a good one. Myra is teaching me every day how to be a mom.  I've spent the last year learning how to trust such a tiny person to know just what she needs. 

I would be remiss to ignore the difficult days (weeks? months?) we've had before we knew exactly what was going on with Myra (although we knew all along something was wrong), but truthfully (not just a mushy first birthday statement, but truthfully) this has been such a good, happy, and fun-filled year.  Seriously...I don't even know what I'm saying.  All this mom stuff is hard work, but it rocks.  It's the most rewarding thing I've ever done.  <Insert all the other cliché parenting phrases that are totally true here> And the best part is, we're still just getting started.

I must also point out that, even though it's just been one year, we're so very fortunate to get even that much.  Some family friends lost their 6 month old,  Jameson, this past summer and he was just three weeks older than Myra.  We know of many families who are struggling or have struggled with infertility and miscarriage.  So, while in many ways the fun is just getting started with our girl, this still feels like such a huge milestone in so many ways.  We are so thankful and Myra reminds us often how lucky we are.

I'm off to reminisce and read Myra's birth story again myself.  And get some of that hard earned sleep!  Happy Birthday (in a few hours) baby girl!

Winter Babywearing Tips.

Now that it's chilly (is that the right word? The high on Thursday is -6, chilly...), some friends have been surprised that I still mention babywearing.  I am absolutely still wearing Myra, but the circumstances and attire are a bit different in the winter.  Much of our babywearing is done inside for chores, shopping, or just for fun; however, dogs still need walking, older kiddos still like to play outside, and we all still need fresh air!  For those interested, here are some tips.  By tips, I mean tips-this is what works well for us, but there are certainly other ways to safely and comfortably babywear in cold weather.

For starters, it's easiest for me to monitor Myra in cold weather if I wear her on my front.  I can see and feel her face and hands. I know if she's taken off her hat.  I can tell by the look on her face if she's still enjoying herself or if she's ready to go inside.  I feel like I can better block her from the wind when she's on my front, too.  As far as her attire, I dress her in light layers.  See those polka dots on her legs? Those are leg warmers over her pants.  Typically, her pants ride up exposing her skin, this way she's completely covered.  You'll  notice she isn't wearing a coat , boots, or mittens because her torso, arms, and legs will be covered by my coat (another reason I like wearing her on the front!).  The hat is important because her head will be exposed.  And she has no hair.  But mostly the exposed head part in general.  I make sure to check her frequently because I don't want her to get too warm and start to sweat when it's so cold outside or that could be bad, too. 
Although I do wrap Myra, we've been using a soft structured carrier (SSC) a lot lately because she thinks I'm a jungle gym while trying to wrap her, so a SSC is just easier.  Many wearers particularly enjoy using their wraps in cooler weather (again, is a high of -6 still considered "cooler weather"?) because there is much less open space for drafts.  Wraps are often known for a more snuggly feel, but use whatever you're comfortable using!

This is the coat I wore when I was pregnant with her.  It is big enough to cover a pregnant belly or, so far, wearing a baby.  There are coats made specifically for babywearing, too.  Her feet don't dangle out, but there is an opening at the bottom of my jacket.  I just hold my hands there to keep us both warmer.  When getting ready to head outside, don't forget about dressing yourself-hat, mittens, scarf, whatever you  might want to keep yourself warm, too.  Of course, be extra cautious with your own footwear and be aware of the conditions on the ground.  It's easy to slip and fall in Minnesota winters!

If you'd rather wear baby outside your own coat, make sure he/she is fully bundled and monitor frequently.  Happy Babywearing!  

Friday, January 17, 2014

Down with the Sickness.

Long time, no post.  Oops.  We've been busy post-diagnosis enjoying a happy, healthy baby who sleeps well and can now eat peaches and coconut (and likely potatoes-almost done with that trial-luckily we were at the end of our mid-trial break for all of this, so we're pretty confident this has nothing to do with our potato trial)!  She's back to sleeping 12 hours at night and not even waking up for a bottle if we can get enough food in her during the day.  No random night time screaming, gaining weight well, everything we hoped to see.

...until Wednesday night.  Around 9:30pm Myra was coughing in her crib, but going back to sleep, so we let her be.  She started to whine, so I went in to feed her but kept the lights off.  I've gotten in the habit of feeling her sheets for vomit since that has happened a couple times and there was a damp spot, but she drools a lot so I ignored it.  I put her back down and she slept for a while then started coughing again.  She was pretty restless then started crying along with the coughing.  At about 10:30pm I went into her room and turned on the light this time and there was vomit all over her crib.  I scooped her up, went to get Trevor and asked him if we should head to the ER.  FPIES babies can go into shock from vomiting if they are having a reaction.  There was no known ingestion of anything other than her safe foods, but I'd rather be safe than sorry and the vomiting reminded of us of past reactions (frequency, intensity, quantity).  Trevor suggested waiting to see if it would happen again, and as he was saying that Myra vomited on him and he said, "yep, we're going in."  While I packed a bag (not knowing if we'd be there all night) she vomited on him again.  Like I said, there was nothing known that she ate, but it was also her first day in daycare so I wasn't with her all day.  Now, let me pause right here and say our new daycare mama is wonderful.  She's laid back and bubbly and cheery and her house was very clean (not even just clean for a daycare house, but truly very clean!).  Myra had a great day there, loved all the kids, they loved her, she napped really well, and ate only her safe foods.  We know daycare is in some ways risky because kids are messy and there's not a 1:1 caregiver:kid ratio, but as far as we can tell our provider is as good about food safety and cleanliness as one could expect.  That said, some FPIES kids are so sensitive they react to cross contamination of food residues on things like toys.  We have had no reason to believe Myra is that sensitive, but in that moment of Myra having what appeared to be an FPIES reaction the night after her first day in daycare my heart sank.  Again, not because we suspected any fault by our provider, but at the thought that Myra could be one of the kids who is that sensitive-then where would that leave us?  I was excited for her to be in a good daycare, make some new buddies, have a wonderful part time job opportunity doing something I love, the extra income, all of it.  We could get a nanny, but truthfully we like the idea of a daycare setting.  So, I fought back tears as all these thoughts were running through my head as I flitted around the house packing a bag to bring to the Emergency Room because my baby wouldn't stop vomiting.  We were all already exhausted (Myra after a very busy day of playing with new pals, me after a marathon day at my new job, and Trevor after being away for two days).  As we loaded Myra into the car, she vomited again.  I ran back into the house to get some burp cloths (yep, those still come in handy Christy, Amy, and Jen!) and a change of clothes for Myra.  (Side note: we did notice a rash few little red pimply type dots on Myra's face when we put her to bed, but she has pretty sensitive skin so I figured that could have been a million things with which she came into contact at daycare and neither of us was really concerned about it.  Don't mind the scratches, she did that to herself last week!)

As I drove, my heart was racing and doing some funky extra beat thing (no idea what that was all about...).  Oh, I should point out that between vomiting episodes, Myra was all smiles.  She was waving, saying, "hi! hi!" and as we put on our coats she was saying, "bye bye!!"  So, rolling up to the ER saying our kid is really sick and should probably get put on fluids ASAP while she is smiling, waving, and saying hello to everyone probably made us look a little silly.  We showed the ER letter to the admin guy, but that didn't seem to put them into any sort of rush.  Myra vomited again in the waiting area and they gave us one of those lovely little vomit bags as if we could politely ask our infant to aim her vomit.  Anyway, we eventually got a room, got checked out by the nurse then the doctor.  They kept a copy of the letter, said she looked healthy, vomiting aside.  She was still smiling, crawling around the bed, waving at people, only really fussing when they had to mess with her (not a fan of the tongue depressor).  Myra got some Zofran to help with the nausea (no idea how effective that is for FPIES, but we weighed the pros and cons and decided to give it a shot).  Her vomiting appeared to be done anyway, but we felt so helpless.  She drank a little bit of her bottle at the ER which was comforting.  We got home around 2:30am, got her ready for bed, she drank a little more, then slept til 8.  (Regarding the rash: it seemed to get worse while at the ER and we noticed a red rash on both of her wrists-not sure if that was related or not.  She may have even rubbed her hands in puke so it could just be from that.)

Most of the day she refused bottles completely.  I got her to drink maybe half an ounce a couple times, but she really wasn't interested.  She did eat some of her peaches though.  She wasn't quite herself, but I figured all that vomiting (it is pretty intense vomiting), dragging her to the ER in the middle of the night, and just being tired would explain that.  Heck, even just the busy, fun first day at daycare could have made her extra tired, not to mention the added chaos.  Myra napped normally throughout the day.  I did call our daycare provider to ask if she had any idea if Myra could have gotten into anything or if she had any ideas at all.  She mentioned Myra didn't drink as much as she or I thought she would have.  I hated making that call because I completely trusted her in the first place (and still do) and there's really no way to ask those questions without sounding at at least a little accusatory.  But I had to ask.  We're still figuring Myra out-we don't know if she is one of the rare super sensitive to trace amounts reactors.  Or, if there was a known accidental ingestion of something, if that were the case the timeline would have been helpful for us, too.  The only way we know how Myra reacts and to what is by experience; there's no test for any of this.  So, we try to at least learn something if possible.

Assuming that was all behind us, we kept our plans to visit Trevor's cousin and his family for dinner.  Myra ate some peaches there and played with all the kids and new toys, but let us when she was tired and ready to go.  

She willingly drank a couple ounces before we left then a couple more when I put her to bed.  She immediately started crying when I left the room, but I figured she was just wiped out and needed to settle a bit before going to sleep.  I turned on the video monitor and saw a big spot on her mattress.  I went in to check it...more puke!  So while my first thought was to get Myra cleaned up, I was also wondering is she sick with some type of virus? Was last night not an FPIES reaction after all? Is this why she was refusing bottles all day, because she still wasn't feeling well?  Again, with her previous FPIES reactions, once the vomiting was done, the reaction was done.  For her to refuse foods/bottles for a full day then vomit again would not be typical of her past reactions, but she's only had three so I don't know how much of a pattern we can call it.  Myra had been to a babywearing meeting, ECFE and daycare in the last 5 days-it very easily could be a normal virus.  Trevor and I both wished (and still are wishing) one of us would get sick to confirm it was some type of contagious viral thing.  Only an FPIES parent could understand that!

We got Myra cleaned up again and rocked her for a bit.  She passed right out.  After a while, I put her in her crib and she slept all night until 7 waking once to eat at 2:30, she took her whole bottle with no hesitation.  So far this morning she has had close her normal amount of formula, some peaches and a normal nap.  I got her to eat some ice since she wasn't a fan of water yesterday.  I sent our daycare provider a text to tell her it may, in fact, just be a virus and asked if she could let me know if any of the other daycare kids end up sick (none yet).  I just wish there were a clearer way to know.  

Ah, one of the hidden difficulties of FPIES...always wondering if they are, in fact, reacting to something or if it's a normal baby/illness thing.  She's also got two teeth on the brink of cutting through her gums.  She hasn't been a difficult teether at all thus far, but I'm sure teething doesn't help matters and could even have something to do with refusing bottles and food.  At this point, my gut tells me it is more likely viral than an FPIES reaction (not sure about the rash stuff?) because her other reactions have been done once the vomiting stopped, even though the initial vomiting so closely resembled her past acute reactions.  But maybe my gut is more optimistic than it should be.  But really, I just wish my gut would vomit so we could settle this once and for all! 

UPDATE: We're definitely going with virus on this one.  Trevor and I were both sick this weekend, same symptoms Myra had.  Plus, she threw up again Sunday morning twice.  I guess that's good news, but it doesn't mean it has been fun!
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