Adventures in Travel

Adventures in Travel

One of the things I have been most nervous about with Pierce is travel.  When we are home or he is in daycare, I have full control over all food provided to him.  I do believe a gluten free lifestyle can be pretty painless inside the four walls of our comfort zone, but venturing out to someone else’s home or on a trip is when you lose control.  We knew we’d make a trip to Kentucky over Memorial Day weekend to see family, my cousin and her kids would be in from St. Louis, and my parents would have opened the pool.  As soon as we nailed the trip down, my mom sent me a text:

Mom: Can you provide me easy ideas on what to feed Pierce?

Because I’m in the thick of the lifestyle every day, the answer to this question seems so easy.  But I’m sure, to everyone else it can seem daunting….you don’t want to risk the possibility of the child getting sick on your watch or in your home.

My #1 tip is to focus on the outside aisles of the grocery.  You’ll hear this a lot from people with celiac, but its easier to cook a meal without gluten than it is to find tasty gluten alternatives.  Meats, veggies, fruits are all game.  Spices, like oregano or cumin, are fine…watch out for spice blends.  Many spice blends include a non-caking agent which can be gluten so I always take the route of mixing my own. And because I tend to lots of Asian marinades, make sure your Soy sauce is gluten free or use Tamari sauce 🙂

Wheat is one of the top seven allergies in the nation so on USA nutritional panels, it is must be called out if contained within the product.  You’ll be able to easily identify wheat, but barley and rye can be a little trickier so if you aren’t living a gluten free lifestyle every day, its best to just not risk it.  If you question whether or not its in there, steer clear:) If you are dying for some good old pasta or bread, I like the corn/quinoa pasta, Udi’s hamburger buns and Kinnikinnick sandwich breads

There are several really helpful apps for iPhone and Androids to help lead to you gluten free products.  I personally love the ShopWell app.  Upon registration you enter what you are trying to avoid (gluten or sugars, fats, etc) and then you can scan the barcode of any product…you’ll immediately find out if the product is for you or not.

Lastly, just ask.  I would rather someone call me 40 times asking if particular foods are ok for PIerce than feed him something questionable.  No one wants to be around Pierce after he’s eaten gluten…you don’t sleep and the diapers are the most awful thing on the planet.  If you get nervous about a particular product or particular meal, ask.  Or google….lord knows I still google ” is XXXX gluten free?” about 10 times a day.

He did great in Lexington.  He played, laughed and ate up a storm!  We visited Gluten Free Miracles in Lexington….a fantastic gluten free bakery so if you live there, stop by and support them on Burt Road.  And have a lemonade cookie.  I dream about those things.  Or visit their website for delivery to your home www.glutenfreemiracles.com

Next stop, Holden Beach NC for a week in July.  I’m not as worried about the food since we are surrounded by fresh seafood and amazing produce stands, but cross contamination is the easiest way to get Pierce sick.  Little things like making him a sandwich on gluten free bread after making a sandwich for my mom….just wash up and use a different knife and cutting board. I certainly don’t want to force everyone around me to go gluten free, just force everyone to be a little more aware.  No one would want to make this face sick, right? 🙂

Happy As a Clam
Happy As a Clam
Playing at his great-grandmother's house
Playing at his great-grandmother’s house
Brothers in matching suits
Brothers in matching suits
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Is my baby behind?

Is my baby behind?

You know those emails you sign up for when your pregnant.  The ones that tell you each week that your baby is the size of a particular fruit or vegetable?  Well, they keep coming after your child is born, alerting you to all the milestones your child is hitting.  They are great, until your child isn’t hitting those milestones.

I’m competitive by nature.  I have to win at everything…. which is hilarious because if you watched even 5 seconds of me playing a sport in my younger years you’d know I lose A LOT.  Typically this beautiful piece of my character comes out while driving as I race random people from stop lights.  It also appears while cooking when I need my food to look better than your food.  Do I sound like a 7 year old yet?  Well, this craziness also appears with my children.  I want them to be successful in everything, never feeling the pain of being second (flash forward 10 years from now when some coach somewhere will tell me not to come to anymore games!).

Ford was always that kid.  He knew his colors so fast, he ate with utensils super early,he started walking early…basically he was a child genius:)  In all honesty, he has always just been a fast learner and I pray that continues.  Now, enter Pierce.  Pierce lost a good 9-10 weeks of development in a very important time frame.  Kids his age were mastering walking, talking,  being able to identify their nose, etc. when he got sick.  He lost a ton of weight and was very rarely at school interacting with teachers or other kids.  He’s behind those stupid email milestones.  And it breaks my heart daily.

I know it shouldn’t matter.  I shouldn’t get upset when I see kids around the same age walking perfectly, talking, looking older than Pierce.  But, I’ll admit it.  I do.  It doesn’t help that  apps like Timehop remind me daily of pictures of Ford at this age…he was walking and wearing 18-24 month clothes.  18 month shorts have to be rolled up at the top to stay up on my skinny little guy. People constantly ask “is he walking?”, “what has he learned today?”. Others will say “oh, don’t worry, kids all develop differently”.  But, when he just crawls across the floor at school around all the other kids who are walking, I feel the eyes of parents and teachers on me.  When someone posts a picture of Facebook of their child who is the same age…and she is dancing or he is walking to his dad, I break inside.  “Why can’t Pierce do that?” and  “Just hurry up and learn” secretly rush through my brain.

These are all such selfish thoughts, I know.

The blessing is that he has no idea.  He doesn’t have some mental scorecard saying he’s behind.  He is just thrilled his joints don’t hurt anymore, that he can eat without vomiting and he can go to school daily.  So I have to quiet my crazy.  I have to do my best to hide my stress.  I remind myself daily that there are far worse situations in this world and that we are blessed with a diagnosis we can control.  But it is still painful.  It’s still sad sometimes.

Celiac disease will always make him different.  Friends will want to go to a fast food restaurant and he won’t be able to eat.  He will be limited on what he can eat at birthday parties.  Hilariously enough I met a woman whose son with Celiac had to break up with his girlfriend because kissing her was making him sick!   I don’t want to watch him not only struggle with Celiac, but also being behind in learning and development.  So, for now, I quiet my crazy with cookies (Wow! Baking Company’s Lemon Burst cookies are AMAZING!).  Soon I’ll quiet my crazy shopping for new pants.  And one day down the road, when Pierce is walking next to me, my crazy will be silenced….or will have at least shifted to trying to beat you off the stop light.

If at first it tastes awful, try try again

If at first it tastes awful, try try again

Two blogs in, and I need to make a confession.  I have no patience, none at all.  My entire being is built around immediate gratification…it’s a character flaw that I acknowledge yet spend no time trying to fix.  Something I’ve learned over the past few days is there cannot be a baker on earth with this flaw.  Patience is the key to baking, especially bread.  You might wonder how I learned this.  Well wonder no more and take a gander at this “beauty”.  It ties in my book with brown rice bread for grossest thing I’ve tasted.  I should have saved it to use as a boat anchor.  It might have actually weighed more than Pierce.

This was supposed to be sandwich bread, not a sponge
This was supposed to be sandwich bread, not a sponge

Lesson learned: let the yeast due its thing.  I vow to try again soon, but I’m letting my pride heal first.

So, one failure in, but lots of great gluten free meals and treats have been had at the Tucker household.  I’m one of those cooks who doesn’t like “basic” meals, an issue I blame on Pinterest.  If I had never discovered this website, I know I’d be content eating sandwiches, tater tots, and chicken nuggets.  Stupid Stupid Pinterest. I should like basic meals….I have approximately 23 minutes to get food on the table before one of my children (husband included) erupts in a hangry fit.  But I always try to bring new flavors, new meals, and great looking dishes to the table.

I stressed when we went gluten free thinking we’ll just be eating basic meat and veggies every night, but I’ve been pleasantly surprised.  We’ve enjoyed roasted veggies (parsnips and carrots were delish), maple glazed salmon, bbq pork in the crock pot, Italian quinoa bites, gluten free tacos and many many other items.  All thanks to that stupid stupid Pinterest.  I do my best to “pin” new delicious ideas each week, so if you need any gluten free meals feel free to follow along:

https://www.pinterest.com/emilyjtucker/gluten-free-planning/

And the meals are working.  Pierce is growing like a weed.  He is still having to drink Elecare in place of milk (a prescription formula that will help him build up the walls of his intestines).  It is extremely expensive, but we are covered under insurance, at least for a little while.  His next GI evaluation is in August so fingers crossed at that point he can transition off the liquid gold. Although if it keeps him happy and healthy, I’ll pay for it until he’s 18.

I told Nathan the other day I truly think we forgot what his personality had been.  He spent so long being sick, it was almost normal for us to have a child that didn’t smile or play or want to interact.  It is an understatement to say we are thrilled to watch his personality return. Even teachers at daycare have raved about the thrill of seeing his smile and watching him play with other children.  The boy below is our boy and we are so happy to have him back!  Well off to another adventure in gluten-free life!  More bread baking horrors and life stories to come…..thanks for following along

Spending time with his big brother.
Spending time with his big brother.
Riding on his horse Benny....no fear Daddy is standing by:)
Riding on his horse Benny….no fear Daddy is standing by:)
Life without gluten is going to be so hard!

Life without gluten is going to be so hard!

Once the diagnosis of celiac came from our doctors, it felt as if everyone needed to tell me how hard life would be without gluten.  I am sure from the outside looking in the transition from wheat bread, pasta, cookies, cakes, etc. to “cardboard food” would be daunting. However, if life without gluten would keep my son from ever feeling like that again, I knew it would be smoother than anyone imagined.  Plus, after being in the hospital and seeing children much more ill than my sweet boy, removing gluten seemed like child’s play compared to serious battles with cancer and lives spent in surgeries.

I immediately decided our family would totally transition to a gluten free lifestyle (at least when I am not near Joe Bologna’s).  I couldn’t imagine 1)having to cook two meals when I can barely get one on the table in a timely manner and 2)being the mom that says “oh sorry Pierce, I can eat this delicious food, but you need to sit over in the corner and gnaw on that brick of rice bread”.

I should mention now that during the two weeks of hospital stays and our transition home, my mother in law and mother were amazing.  Thank the lord for retired teachers!  It didn’t matter the time, the length of stay, the request, or any other requirement….they were there.  I have an IMMENSE amount of mom guilt.  I practically drag it behind me in a suitcase each day to work.  I hate being away every day, but I’d never felt the amount guilt as I did having to go into the office two days when my son was in the hospital.  My mom was right there, driving across Nashville in rush hour traffic to sit with him all day, so that I could be away.  My mother-in-law came and took Pierce to a doctor appointment and lugged him all over Vanderbilt while I was stuck in a photo shoot.  My mom guilt was still there, but their presence allowed me to keep it slightly under wraps.

My mother, fondly known as Dee Dee in our home, also spent time one afternoon buying what I believe is every single gluten-free item she saw.  Not only did she buy out Kroger, but she discovered the slew of Bob’s Red Mill items at Big Lots, so if you are desperately looking for pancake mix and they are all out…check my pantry!  We learned that some things are terrible, like Brown Rice bread.  I think about that and gag.  There must be people that eat it because it is still being stocked at the store.  To those people…I salute you.  Your jaw strength must be second to none.  I couldn’t make it through one bite without struggling to chew through.  We have, however, discovered many other gluten free items that are not so bad…Bob’s Red Mill pancake mix, corn/quinoa pasta, Kinnikinnick white bread, and I had no better news then discovering Peeps were gluten free.  Dee Dee also took note of my complete panic attack about cross contamination and bought a few new skillets and pots….side note, unless the item is porous, you should be fine.  Baking stones and things of that nature are risky, and toasters should definitely be replaced, but you don’t need to scrape and rebuild your kitchen:)  In other words, don’t be crazy like me.

What makes this transition easier is watching the daily improvement in Pierce.  Removing the feeding tube was exciting and watching him start to walk again was even better.  Hearing him laugh, watching him play with his brother, and actually enjoy food again is the icing on our gluten free, white rice flour and xanthan gum cake!

changes in Pierce
The change in Pierce from before hospital and the week we were discharged.

 

 

 

 

 

Pierce and chex
Chowing down on some Chex cereal
taking steps again
Building up his strength
without tube
Right after the feeding tube was removed!
The Diagnosis

The Diagnosis

 “Gluten allergies are all mental”.

I sat next to a VP of my company  who made this statement during a team meeting one afternoon.  It took every piece of my being not to jump on the conference table and start shouting, throwing my hands around and crying.  Just that week, my 14 month old son had been discharged after 5 days in the hospital.  His diagnosis: celiac disease.  Gluten allergies are mental…..just thinking about him saying that makes me want to scream right now. 

Let me step back for a minute.  Pierce, our 14 month old son, was such a healthy baby.  He, just like his brother before him, loved to eat, play and laugh.  That is, until February of 2015, right after he turned 1.  We started to notice his slow down in weight gain.  Then the vomiting started.  And the diarrhea.  And the crying.  Our first visit to the doctor was a diagnosis of the stomach bug.  Every kid had it, and Pierce was in daycare so it made sense….they pass everything to each other in that petri dish. 

Weeks went by and the “stomach bug” continued.  We were at the doctor almost every week, and almost every week we left with the statement of “just be patient” and “he’ll get over it soon”.  Well, the vomiting continued (and I mean projectile vomit…typically on someone in our home who was nicely dressed), he broke out in a full body rash one week….and still “just be patient”.   So after 7 weeks of this craziness, stress, tears and utter despair watching my son fall apart before my eyes, I did what they tell every mother NOT to do….I googled. Yep, I did it.  And then I, the WebMD doctor, diagnosed Pierce with cancer, HIV, meningitis, and pretty much every other disease known to man.  BUT, in the midst of all that crazy I saw a list of celiac disease symptoms and every single one matched my son.  Every. Single. One.  So, I listened to myself and pulled gluten from his diet.

What we didn’t know at the time was the damage that had already been done by gluten in his system.  At that point, it didn’t matter what we did….he couldn’t recover alone…he was in “celiac crisis”.  So, on the 1,000,000th trip to the doctor, after he lost a pound and a half in one week, blood tests were ordered.  We met with a GI doctor the next afternoon he showed us that the four markers for celiac were all positive.  He then turned to me and said “I’d like to get him admitted to the hospital”.  And I was so relieved.  I knew we couldn’t fix him. 

Pierce spent the next five days on IVs, monitors, and a feeding tube.  I thank God every day that he will never remember that experience.  I, however, will never be able to replace those images….watching the nurse stick Pierce for blood every day, the IV cast he had to wear which left his arm immobile, the nurse walking away with him prior to his scope procedure (and yes, I was “that mom”…who stood in the middle of the hallway crying).  Oddly, I’m thankful for those images now.  They are a constant mental reminder of where he was, and where he is going. 

 

 Our happy boyPrior to the sickness began, Pierce was a silly, happy, chunky guy!

First Day in Hospital with IV castHis first day was hectic, and more than anything I hated that IV cast.

with feeding tubePierce was so exhausted during his first few days as he recovered

First Smile Riding in the CarThe nurses brought this car by, and this was the first smile we saw

His first bite of real foodEating his first bite of real food…I promise he was thrilled.

Music TherapyPierce was so happy when the music therapist stopped by

 

I’ve been scouring the internet for support sites, recipes, and every single thing I have found is wonderful.  Moms packing artful gluten free lunches in bento boxes, baking their own breads after soaking cashews overnight to make flour, and never missing a beat.  But…I’m not that girl.  I might bake my own bread, but it will probably suck.  And I’ll pack lunches every day for my sweet boy, but they probably won’t contain fruit skewers with grapes cut to look like hearts.  I’ll   more than likely be the mom that happily sneaks to Joe Bologna’s in Lexington, KY when my little one is not around and devour a super gluten filled breadstick (this may or may not have already occurred:) ).  But this is our journey.  One I hope will help another mom or dad put in this same situation.