Remembering…and Wondering

One day my children will ask me: “Mom?  Where were you on September 11th?”  This  might be the (long) version I tell them…

I was a mere 19 years old when I hired on at my airline.  A scant 18 months later, I transferred to the Inflight Division.  I had my wings!  For the last (nearly) fifteen years I have been a Flight Attendant at a major U.S. airline.

On Sept. 11, 2001, I was based in the Newark/NY area, and lived in an apartment with a view of the Twin Towers.

I took off from Newark Liberty Airport 30 minutes before Flight 93 took off from the same place.

My flight was a short one that day; we landed in Raleigh/Durham early and were taking a nice break, sitting in First Class, chatting to get to know each other (crewmembers often meet at the beginning of the flight), when the news came of the attacks.  Since we didn’t know him, we just assumed our Captain was a jokester…who on earth would attack NYC?

There wasn’t a single live-feed TV anywhere in RDU!  We were taken to an employee lounge outside of security in order to see what was going on in NYC.

It was there, crowded in with almost every airline employee from the station and several other flight crews, that we saw the towers fall, saw the people jumping from the burning wreckage behind them.

I became numb.

I had friends in the area; I had lived there for over two years, after all.  My good friend and neighbor worked in the Towers.  An ex-boyfriend that was a pilot for United was scheduled to fly from Boston to LA that morning.  I lived in an apartment building chock-full of flight crews from several different airlines.  Before remembering that I was supposed to work that morning, I had made plans to spend the day in Manhattan with a friend of mine – we always took the PATH train to the World Trade Center station when we went.  I didn’t know if he had gone without me.

The world shifted underneath me in every fundamental way one can imagine.

We spent four days stuck in RDU, in a hotel with bad cell phone reception in the best of times.  By the time my NYC area code cell phone could get a signal in RDU, I had over 45 messages waiting to find out if I was alive or dead.

It was only supposed to be a 2 day trip with a short layover.  I only had pajamas with me.  So did the rest of the crew.  Once we managed to find a hotel in the area that would take us, we all went to the mall in our uniforms to buy some clothes.

The hotel experience was surreal.  Every room was occupied – most by stranded airline personnel.  The lounge TV was the gathering point; I saw the bartender change the channel once to get a sports game score and he almost got lynched by the 40 or so Pilots and Flight Attendants standing around.

Every morning we would get a call from scheduling saying we were going to be flying back that day.  We would pack, get dressed, head downstairs, only to find out we weren’t leaving yet, it would be another few hours…another twelve hours…the next day.

In the end, our Captain made the call that we were leaving without our aircraft.  People don’t remember, but there was a hurricane heading towards Florida that week.  Our Captain and one of our Flight Attendants lived in Florida and needed to be home to board up their houses.

So the Captain rented a car and then literally stood in the lounge and shouted “I’ve got a car and am driving to Florida!  Anyone that lives there and wants a ride, be downstairs in one hour!”  His car was full.

Our First Officer lived in Rhode Island, and his fiancee was in South Carolina for a training event.  He rented a car, drove to get her, then came back to the hotel for the remaining crew.

One of our Flight Attendants lived in Baltimore, so we drove back that way.  He made a point of driving on a road that would give us a view of the Pentagon as we headed to her house.  Horrifying.

A few hours later, we were dropped off at the employee parking lot.  Less than 5 miles away (I’m guessing) was the cloud of death that hovered over the Tower location for months following the attacks.  My crewmember and I just stood and stared in shock and horror for a few moments before getting in our cars and heading to our respective homes.

At my apartment, I picked up my cat and hugged her before walking to the window and opening the blinds.  There I saw the view that would greet me every day for the next few months: a black cloud, taller than the skyscrapers, testifying to the destruction brought on by hate.

Shortly after the attack, the anthrax scare started up.  One of the post offices that had directly handled several of the pieces of mail that proved to be poisoned was the post office my mail came from.  I checked my mail with rubber gloves and a face mask for months after that, per the post office letter advising us to do so.

I broke up with the first decent boyfriend I ever had after going to see him in LA and eating dinner at the Santa Monica Pier.  Everyone around us was laughing and enjoying life, and I felt like I was walking in a fog.  He tried, but he couldn’t understand how I had changed.  I didn’t understand it enough at the time to talk to him about it.  It seemed easier to just cut him loose.

In January, I had a total breakdown.  I was shaken by what I’d learned about life; rattled by the fact that I was all alone in the world and that at any moment, everything could end for me.

I moved home to Houston.  I never liked Houston, never felt at home there despite having been raised there, but I had family and friends who had known me a long time, and felt more secure in my foundations being that much closer to my roots.

I still flew and worked out of Newark/NYC airports, though, and still had to board airplanes every day, so while in some cases people seemed to forget about 9/11…I never did.  And I never will.

I don’t attend memorial services for Sept. 11th.  I have gone to the site twice; once right after, and once about a year later.  Personally, I can’t handle it.  I break down into a puddle of mush on the floor when I think about it too much.

In fact, I don’t talk about it much at all, except with very close friends and family.  It’s too personal, too…much.  This is the first time I’ve discussed it in any forum remotely public.

I chose to do so only because I now have small children; children born in a world where the attacks of Sept. 11th will be ancient history.  This will be, to them, what the JFK assassination or Pearl Harbor was for me, though to my parents and grandparents, it was a moment in history that changed their worldview forever.

One day, my children will ask me about September 11th.  How can I ever talk to my kids about this event?  My world was so rocked by this that I made several very bad choices out of fear in the following years.  It took about 5 years before I was able to stop living as though Sept. 11th would happen again any day.  How do you convey that feeling to your kids?  How do you explain how fundamentally altered you were by the experience?  How do you explain why it happened without spreading the fear to them?

How will my children ever understand why September 11th is a bad day for me, and always will be?

In the end, I was not one of the Sept. 11th widows, my children were not orphaned by the events of that day, and all of my friends somehow escaped alive, though my neighbor was on the last train that arrived at the Towers that morning and barely escaped the falling buildings, covered in dust.  My friends escaped alive, but my acquaintances did not.  Turns out, I had done laundry with CeeCee Lyles a few times and we had chatted about her husband and son.  She died on Flight 93.

In so many ways, I was lucky.  I know that there are those who were affected in more fundamental ways than I was.  Still, I am not now the person I was on September 10, 2001, and never will be again.  I still work in an industry that has attempts made on its’ safety.  I still see the places and people of that day every time I go to work.

It will never leave me.  It is me.

There are no good answers to any of my wonderings.  There is no way to make that day less momentous.  Every person in America has their own feelings and experiences of 9/11, and it’s all just too much to reduce to a simple sound byte.

If I can, though, I will use my experiences and memories of that day to say one thing to my children when they ask: always hug and kiss your family when you leave them, and never let them doubt that you love them.  It’s the one regret I hope they never have.

Break Out the Nursing Bras!

One month in to our family elimination diet, I am now an expert at making delicious, juicy hamburgers, pot roast to drool over, french fries you can’t wait to eat, and am now branching out into quinoa recipes!

This month has brought about a 25 pound weight loss for me, slightly better looking diapers for Mr. Charm, a bigger appetite for the Geek and some interesting changes for Mr. Happy.  He has gained FOUR POUNDS in one month!  That’s formula feeding for you!

At the beginning of this month I thought he was reacting to the Ele-care, but the other moms’ said to give it time because sometimes there is a transition to taking elemental formula.  So we did, and he seemed to be pushing through to a good baseline.

Then he had the unfortunate oatmeal contamination, but quickly bounced back to being a Happy Baby again.  Sadly, the last week has brought more spit up, more vomit, the return of eczema, and the alarming increase of blood in his stool.  This led us to conclude that he had ‘transitioned’ to elemental formula, but that his FPIES build symptoms were slowly catching up to him.  Our fear was that an FPIES reaction was just around the corner.

So Saturday, I started nursing Mr. Happy again.

Oh, my!  It was hard the first day.  He’d gotten used to bottles, and they’re much easier for a baby to drink from.  Nursing takes effort, and he fought against it for most of the day.  Finally, though, he seems to be getting back in the habit of nursing.

Best of all, though, is that for the last two days we have had only ONE spit up, no vomit, his eczema is already looking like it is clearing up, though we’ve had no poopy diapers to investigate, so no way to make an immediate comparison.  It will probably take a few days for his system to heal up enough to stop bleeding, anyway, so I won’t worry if I see more blood in that time frame.

As we’ve seen, though, he seems to have slightly atypical FPIES.  I’m sure there are some things he will react quickly to, but so far he seems to react slowly over time…as if there is a threshold of how much of one protein he can handle before his body rejects the food.  So now, we wait.  We nurse him, and give it a full month (at least!) before trying any new foods in my diet to see if he is handling my elimination diet well or not.

I’m SO hoping and praying that I’ve accidentally chosen foods that are safe for him!

I started nursing not a moment too soon, I think!  Remember this?

ONE pumping session from 50 days ago.

That was one single pumping session at Children’s Hospital.  I was pumping about 6 times a day then!  My mind boggles at the thought of the huge quantities of milk I was producing!

The last week I’ve been pumping just as often but only getting a TOTAL of about 12 ounces PER DAY.

Today is the first day I’m going to start storing my milk again (in case it proves to be safe for Mr. Happy, I want to have it for any future separations), and I’ve only pumped twice.  Before his hospitalization, two times a day was enough to ensure at least 15 ounces per day for the stockpile.  Today?  I managed a whopping 1.25 ounces from both sessions.  Ouch.

I’m SO happy to be done with bottle feeding!  I will never understand people who choose to bottle feed their kids.  Oh, I’m not talking about people for whom it is no choice, or who work and find they have to supplement.  I’m incredibly grateful that bottle feeding is an option for those of us who need it at times.

No, I’m talking about people who – from birth – choose to bottle feed even though their milk has come in just fine.  Bottles are a PAIN.  My days have been SO much freer just in the last 36 hours simply from not having to sterilize, wash, and mess with bottles.  Whipping out a boob is so much easier!  And easy is the name of the game with a baby in the house, right?

The Geek says he has a larger appetite because we’re eating so healthy that it seems his body is processing the foods much more efficiently and therefore he needs more calories more frequently to feel satisfied.  Maybe Mr. Charm needs to eat more, too? He didn’t gain any weight at all this month.

Well, that’s the update about how the first month of our elimination diet has gone, and our plans for the next month.  Sorry it’s not a more amusing post, but part of our story is simply stating what we’re going through, and it seemed fitting to wrap up the month with a ‘statement of fact’ entry.

I’ll have some new recipes this week, so stay tuned!

What interesting things happened to your family in the first month you did an elimination diet?

The Guaiac You Say!

Yesterday and today brought three more diapers I wanted guaiac-ed, so this afternoon I drove the kiddos the 50 minute, 35 mile drive to our pediatricians office.  They tested positive.  Not even ‘trace’ – just flat-out, full-fledged “positive” (which is a negative as far as I’m concerned).

Combine that with his much more frequent spit-up, his eczema, his make-Mama-insane-clinginess, his bad sleep the last few nights, and I think it is safe to say he’s having FPIES build symptoms, not transition symptoms.  I think we transitioned and came out okay with tolerating formula, but the slow build symptoms to the ingredients in the formula are starting to show up now.

I’m sure he could be getting something from somewhere; some unknown substance on our hands that is causing this.  It just seems more logical to assume that what a strictly liquid-fed baby is reacting to is the liquid he is fed.  The Elecare.

This is bad news, folks!  This means that there is a decent chance Mr. Happy is sensitive to corn.

Corn…is Evil.

Corn is everywhere, and no one in this country is required to label if corn is in the product.  Not to mention, it is in the packaging for most products, and packaging is never labeled!  Board books are often made of corn.  Tell me, do you know of any teething baby/toddler that hasn’t chewed on a board book?  Exactly.  Me neither.

So we’re still watching and observing.  I’ll start going through our personal care products with a fine tooth comb, spending yet more time on the phone and internet to learn of all the ingredients they contain, and I’ll start nursing Mr. Happy again this weekend.

This is the really tough part; we don’t actually know what he is reacting to yet.  I suspect oats, rice, sweet potatos and chicken based on what I ate in relation to his reactions in the past, but I don’t know anything absolute yet.  So I am praying really, really hard that the 12 items on my menu are all okay for him; that he does not react to any of them and we can find Happy Baby again within the next month.

In good news, our allergist called today.  She wanted to check on how Mr. Happy was doing.  After chatting for a bit, she asked if I minded if she got the Allergist Team at Children’s Hospital on board with his care.  Do I mind?  Absolutely not!  In fact, I was going to ask her about that at our next appointment.  So now Mr. Happy’s team has expanded across the state.

That could make you feel important if it wasn’t for such a rotten reason.

Also, how awesome is our allergist?  Her office is closed on Fridays.  Yet she called me on Friday to check up on my son!  She’s proactive, and willing to pull in other experts in the field to make sure he’s cared for properly.  That kind of care breeds some serious loyalty in a Mama Bear, dontcha know!

By the way, does anyone recommend any at-home stool testing kits for blood?  The 50 minute, 35 mile drive one way to the pediatricians office every time we’re suspicious is sort of ridiculous!  Just one more adjustment to country living – now I have to create my own laboratory, too!

The Incredible Shrinking Mama

Would you like to know how to finally drop that unwanted weight?  It’s easy!  I’ve finally learned the secret:  STOP EATING.

(Sort of.)

One side effect of this elimination diet that I hadn’t counted on was the flat-out melting away of poundage on my behind (and my sides, and my arms, and my legs…).

I’ve lost 25 pounds in three weeks.  Y’all, that’s a whole toddler!  It’s exhilarating stuff.  Frightening, but exhilarating.

I know the experts say you shouldn’t lose more than a pound a week for healthy weight loss, but since I’m not doing this TO lose weight, I’m not going to worry my tired little head over that piece of wisdom.

What I am going to keep in mind, though, is that carbs and sugar seem to be the weight killers for me.  I was never someone with a huge sweet tooth, but I would positively drool over the thought of nachos, bread, pancakes, waffles, tortillas and chips with salsa or queso.   (Oh, yum…why did I start thinking about that now??)  One of the first things I did when I discovered Mr. Charm couldn’t have eggs or dairy was to seek out replacements for those very things.

It was actually a lot easier than I thought to find dairy and egg replacements for breads and breakfast goodies.  Maybe it wasn’t a good thing that I did, because on this diet I can have NONE of those things…and my body is just…rejecting  the extra poundage I carried for too many years.

I now, officially, am wearing clothes I haven’t been able to stuff my body into for 16 years.  (No, I don’t keep “skinny clothes” in my wardrobe, but there are always a handful of garments most women keep for sentimental reasons, and by yimminy, I can wear them again!)

So aside from keeping Mr. Happy healthy, I’ve discovered that I can perhaps keep myself healthier, too.  When I can start eating “normally” again, I’ll keep a close eye on those weight-killers so I can stay  at my “OMG Let’s go shopping!” weight.

Honestly, clothes fitting aside, one of the best things about this is that I can finally curl again.  Once upon a time, I always sat with my legs curled up under me in some way or another.  I didn’t even realize it, but the last few years I haven’t been sitting that way.  My legs wouldn’t fit comfortably squeezed so tightly.  I’m curling up all the time now, and I LOVE IT!

I’m also sleeping better, and have a little more bounce to my step.  I don’t know if that’s from the weight loss, or from just cutting out the processed crap that was still in my diet, but…either way, it’s a good thing.

By the way?  I’m still losing weight.  That 25 pounds was apparently just the starting point.

Have any of you lost crazy amounts of weight on an elimination diet?  Please tell us you didn’t gain it all back!

My Husband Carries Poopy Diapers in his Backpack

Yesterday Mr. Happy had two suspicious diapers.  They were mucousy, and sort of, maybe looked like a little tiny bit of blood…but I wasn’t sure.  Since we want to start nursing him again this weekend, I’d really like to know what his little body is doing before we start so any reactions are obvious.

So, this morning my sweet husband stuck a ziploc bag of two poopy diapers into his computer backpack and headed out the door.

What, you don’t carry things like that with you?

He went straight to the pediatricians office to have them guaiac-ed (tested for blood).  One tested negative, one had trace amounts of blood.

That’s good!  And, that’s bad.  Good because he’s obviously improved from July, but bad because his intestinal tract should be healed up enough that he has NO blood in his stool.  Bad because this makes the question of how he’s doing on the Elecare gray and murky instead of clear and easy.

It could be a small anal fissure, or it could be a slow build to Elecare reactions.  After he was born, he was perfect.  At a couple weeks old he started having mucousy diapers.  Then he had an FPIES reaction (that we didn’t know was an FPIES reaction).  Then bloody stool came.  Then Angel Flighted to Children’s.  Then transition symptoms to Elecare.  Then Happy Baby again!  Now, mucousy stool with microscopic blood.

If I am to follow patterns, here, I would guess that the next thing to show up is an FPIES reaction!  So, I guess it’s a good thing we’re going to start nursing him again, but I sure wish he was perfect, happy, with no gray and murky symptoms when I start.  It will be harder to know how he’s handling nursing this way.

And I have another diaper for my husband to stick in his backpack tomorrow.

What crazy-weird things have you or your spouse done in the name of taking care of your kids?

Are You An FPIES Mama?

I started writing a post about what life as an FPIES Mama was like, with all the best intentions of helping people understand the stresses and challenges of our lives. During editing, I realized I was depressing myself! It IS hard, but there is still joy in life!

Instead of being serious and depressing, I made up this handy-dandy little quiz that will help convey what FPIES living is like, while giving my fellow FPIES Mama’s a laugh (hopefully)!

ARE YOU AN FPIES MAMA?
(Answer “YES” or “NO”)

  1. I have photographed my child’s poop.
  2. I have scrutinized my child’s poop.
  3. I have spent more than three hours of my life on the phone with manufacturers about ingredients in food, skin care, or cleaning products.
  4. I give small children with cookies suspicious glares when they approach my child.
  5. I avoid play dates like the plague.
  6. I have bought kitchen utensils or appliances for the sole purpose of decreasing cross-contamination in my kitchen. OR
  7. I have made my home a “trigger-free” zone where only safe foods are allowed.
  8. I have learned at least three new ways to chop vegetables.
  9. I now cook with ingredients that I didn’t know how to pronounce a year ago.
  10. I now cook with ingredients that my husband thought were fictional foods in fantasy novels (i.e. Millet).
  11. My stack of medical bills is thicker than my child’s foot.
  12. I know what a 504 plan is.
  13. I have a 3 page, typed instruction guide to give to the babysitter. OR
  14. I have decided that there is no one I can trust to keep my child alive, so I never EVER leave their side. Ever.
  15. I have bailed on my family for holiday meals because my relatives either don’t understand, won’t accommodate, or flat-out undermine my children’s food restrictions.
  16. I have bailed on birthday parties, pot-lucks at church, or other food oriented gatherings because it was ‘too dangerous’.
  17. I will not be able to afford a vacation, fund my retirement, or build a savings account for the next 4 years (at least!), but…
  18. I have traveled more than 200 miles to see a specialist for my child.
  19. I have bought a whole, grass-fed cow.
  20. I have either planted, or seriously considered planting a garden.
  21. I spend so much time in the kitchen I bought those cushiony floor mats for in front of my sink, counter and stove.
  22. I have taught doctor’s about my child’s condition, and told them how to treat it.
  23. I sweep or vacuum my dining room at least 5 times every day, because crumbs are evil!
  24. I’ve installed a lock on my refrigerator and pantry doors.
  25. Any time we leave the house, I have to pack full meals and snacks for every member of the family.
  26. I’ve forgotten what fast food tastes like.
  27. I’ve resisted the urge to slap someone who compared my child’s FPIES to a lactose intolerance and suggested I get Lactaid to fix everything.
  28. I know what a T-cell is.
  29. I checked out a High School Biology textbook from the library to brush up on my knowledge of the gastrointestinal system.
  30. I’ve lost more than 20 pounds on an elimination diet so I could keep nursing my child.
  31. I’ve memorized the ‘mystery phrases’ manufacturers use in their product labeling.
  32. I know where all the local farmer’s markets are, and have become friends with a few of the farmers.
  33. I called my Grandma up to have her teach me how to preserve food for year round use since my child can only eat organic, un-processed fruits and vegetables.
  34. I can now speak “medical”.
  35. I keep a bag packed for myself and my child for the hospital at all times, that includes copies of their medical records.
  36. I hardly ever see or speak to my friends anymore, but ‘chat’ with other FPIES Mama’s on message boards every single day.
  37. There’s an election this year? Sorry, I’m too busy taking care of my family to have noticed.
  38. I would go to hell and back – and sometimes think I already have – to get my child the proper medical care.
  39. I spend more time in prayer to my God than I ever did before.
  40. Some days I just want to cry, but then I see my baby smile and giggle and I somehow find the strength to put on my big girl panties and keep going.

If you answered “YES” to more than…oh, geez – you FPIES Mama’s know who you are! If you answered “NO” to most of these, then you aren’t – but please be nice to the Mama’s that are. They need your friendship and support very much. Why don’t you offer to come do their laundry one day? They’ll love you for it!

Disclaimer: Not all of these conditions apply to me!

Do you have any quiz questions to add?

Snack Attack – Dehydrated Melon

Want to know the easiest, healthiest snack you’ll ever make?

It’s seriously so easy, so simple, I’m flabbergasted I didn’t think of it myself.

One day I was waiting to board my flight and a family with twins was waiting nearby.  I struck up a conversation, and while we were talking couldn’t rein in my curiosity about what those little boys were eating.  I asked, and the answer: dehydrated cantaloupe.

Interesting.  I filed it away and did nothing with it for ages, but now, with this ED for the family, I’m working valiantly to find munchies for Mr. Charm (and myself).  After another day of cutting up cantaloupe and having Mr. Charm refuse to eat it, I caught myself looking at my dehydrator and suddenly remembering the twins at the airport.  They couldn’t get enough!

Could it really be that simple? There was nothing to lose, so I tried it.

Can I get a cheer from the crowd?  He can’t stop eating dried cantaloupe.  He asks for it by name!  (Other snacks he loves, but doesn’t request.  This he DOES!)

So here’s how you make the simplest snack ever:

Cut up your cantaloupe and/or honeydew melon.  I cut it in half, scrape out the seeds and strings, then cut it into 8 strips.  Then I cut off the rind.

Cut each strip in half, and lay out on a silpat or parchment paper in your dehydrator.  I have an Excalibur.  They’re pricey, but excellent.  I bought it to make dehydrated meals to take on the plane with me and I’ve MORE than made back the money I spent on the machine in food savings on the road.  If you don’t have a dehydrator, I suppose you could do this in the oven.  I’d probably set the oven to the lowest possible temperature and check the melon occasionally.

All laid out to dry (I forgot to take the picture when they were still completely fresh. These had been drying for about four hours.)

Toss the sheets in your dehydrator and set at 105-110 degrees.  Turn the timer to 24 hours, and close the door!

Four cantaloupes and one honeydew melon drying in the dehydrator.

In dry conditions, I’ve had the melons dehydrate in as little as 12 hours.  When it’s humid, it can take quite a bit longer!  This batch took a little over 24 hours to dry!  So, wait for a bright, dry, sunny day to dry melons.

When they’re done, they aren’t hard as rocks.  They have a little bend to them, sort of like raisins feel (when they’re not stale.  Please say I’m not the only one that has old, hard raisins in her house!)  So, when they’re very dry but still bendy, take them out of the dehydrator.

All dried up and ready to eat!

Toss them in a ziplock bag, and store them in your refrigerator.  They’ll keep longer that way, and I usually cut up several melons at once.  Even Mr. Charm, with his love of dried melons, can’t eat that many too quickly!

They look browner in the picture than they do in real life. In any case, they’re delicious!

One note: the honeydew dehydrates well, but it stays quite a bit stickier than the cantaloupe does.  I’ve learned that it’s best to cut the honeydew into smaller pieces, about the size you would normally eat (if you were eating it fresh) before you dry it.  Then they don’t stick as much.  Cantaloupe is easy – it doesn’t stick as much so you can get away with minimal prep work!

_________

DEHYDRATED MELON

-honeydew, cantaloupe, melon of your choice

1. Cut and clean your melon of all seeds and strings.
2. Cut into strips.  Cut off the rind.
3. Cut into as small a piece as you like.  Cantaloupe does well in halves, honeydew does better in bite sized pieces.
4. Lay on parchment paper or a silpat on your dehydrator trays.
5. Insert trays into dehydrator.
6. Set temperature to 105-110 degrees, and timer to 24 hours.
7. Turn it on, and wait!  After about 8-10 hours, check the melon.  When it is pliable but no longer moist, it is finished!
8. Plop into a ziploc bag and store in the fridge.
9. Enjoy eating delicious melon whenever and wherever you want!

__________

Have any of you dried something you think was unusual?  Have you dried melon in the oven?  How did you do it, and what were the results? 

Baseline?

Mr. Happy is happy.  I think we have a baseline!  (knock wood)

“Don’t bug me now, Mama! I’m concentrating really hard on getting this thing into my mouth!”

The concerning symptoms from last weeks hand cream incident have worn away, and he’s back to being a happy baby again.

He wants to be held, or at least within 3 feet of someone (and they must be looking at, talking to, or in some way interacting with him) at all times, but I suspect he’s teething right now and that could easily explain the clinginess.

He is coughing, and occasionally gagging.  I’m thinking he may have reflux, just like Mr. Charm did.  However, there is some confusion in my mind over this now, because our GI said that “reflux is a symptom, not a condition.”

Well, if it is a symptom, a symptom of what?  FPIES?  How is that possible if he’s handling the Elecare fine now?  Why would he be refluxing to a safe food?

And if it is, in fact, reflux that must be treated with medicine, what medicines are safe?  Mr. Charm was on Prevacid, which I now know has dairy derivatives.  Totally NOT safe for Mr. Happy!

So, while there are still some questions, and there is still some working it through left to do, I’m tentatively happy that we seem to be at a safe food place for him…for now.

I still plan to try nursing him again, and next week will be 4 weeks on the elimination diet (ED), which was when we planned to begin again.

Fingers crossed that this is, truly, his baseline, so we can know right away if he’s not tolerating my breastmilk!

Do any of your LO’s have food intolerance complications with reflux?  What wisdom can you share?

Translation, Please!

Mr. Happy had a rough day.

He wanted to be held.  But only in certain positions, thank you!

He ‘snacked’ all day.  Wouldn’t drink a full bottle at all!  Just an ounce at a time, but every single hour.  It was straight up comfort feeding.

He napped a ton.  More than usual for his age.

His face wasn’t smiling and happy today; it was drawn and pinched, as if he were in pain.

Suddenly, right at bedtime, he seemed to perk up.  He wasn’t smiling, but he wasn’t frowning, and he wasn’t holding his body tightly the way he had all day.

And even after all that napping, he went right to sleep.

So, is this just a normal ‘bad day’ for a baby?  Is this continued FPIES reaction to the oatmeal?  Is this part of build symptoms for an Elecare reaction?

Where’s my handy dandy little translation book when I need it!?

We will continue to watch him, and hopefully he will perk up considerably in the next few days so we will KNOW what is happening to him.

At least as much as any parents of an FPIES kid can know what is happening.

Have any of you had a situation with your kids where you wish you had a translator handy?  Do tell!

ABC Does FPIES

Today I saw a news story from ABC that came out about FPIES.  I think it’s worth checking out.

It talks about the International Association for Food Protein Enterocolitis (IAFFPE) and one of the founding families of that organization.

It’s so good to read about this condition in a mainstream news media article!  Get the word out!  It’s the only way we’ll learn more so our children can suffer less.