The 21-Day Challenge Week Two: Willpower

SURVIVAL

The first week of the Eat Like Brady Could Eat Challenge (ELBCEC. There.  An acronym!  I feel like this is all official now!) was all about sheer survival.  Plain and simple.  The headaches and shakes started to go away by Day 5.  The headaches were most likely caused by sugar withdrawal.  That’s a very real thing, by the way, and it’s not pretty. 

For as long as I can remember, I have had a perpetual sweet tooth.  I’m pretty sure it was passed down to me by my mom (thanks Mom!).  I have always had to have a little something sweet after each meal.  I have also enjoyed a little dessert action in the evening, after the kids are down.  It’s my thing.  I love my thing.  And now my thing is no longer and has been robbed of me.  I went to a very bitter place most evenings during Week One.  I even tried making “banana ice cream.” It’s simply made by blending a frozen banana into a “soft serve” consistency.  I added a bit of almond butter and cinnamon.  It’s not bad, but it’s no Cookie Dough DQ Blizzard.

THE FINE LINE BETWEEN EUPHORIA AND PASSING OUT

As promised by JJ Virgin’s 21-Day Virgin Diet, my husband lost 7 pounds in the first seven days and I lost 5 pounds.  It was a long, agonizing week and those pounds were not lost easily.  I kept encouraging my husband that my coworker, who has tried the diet before, says that once you get passed the first week, you will start to feel "euphoric".  My husband kindly reminded me that there is a fine line between euphoria and passing out.  He definitely has a point. 

Thank goodness my Virgin Diet recipe book came on Day 4, and I felt like we had been given a glimmer of hope.  We had been living off of the two Virgin Diet shakes/day and quinoa pasta or black bean/salsa rice wraps for dinner.  The recipe book is full of really good recipes.  I have already earmarked five to make over the next week or two and they look promising! 

SNACK TIME!

I have always been a habitual snacker as well.  There.  All my eating habits are out there.  I usually have a snack mid-morning and mid-afternoon simply to keep the shakes away.  I know it’s a blood sugar thing and I have always been the type to need a snack between each meal.  Well, with this diet my snacks felt fairly limited.  I went to Whole Foods to find some top 6 food allergy-free snacks.  Not easy, let me tell you. 

I found bags of these bean snacks.  One was cleverly labeled, The Good Bean, Sweet Cinnamon.  I thought, well, that sounds tasty.  Fall is here and I love cinnamon.  The verdict?  It tasted like sawdust sprinkled with cinnamon.  The exact opposite of appetizing and I was pretty disappointed.  I also found some rice “lightly salted” brown rice cakes.  The verdict?  More sawdust, but with a hint of salt this time.  I was very discouraged.  Apples became my best friend for snack time.  When I really feel crazy, I slice them and put a bit of almond butter on them.  That really is pretty good.

IT AIN’T CHEAP

It ain’t cheap being healthy.  I have quickly seen my grocery bills skyrocket since shopping organic at Krogers and Whole Foods.  So many times I have picked things up to look at the ingredients, get all excited because they’re top six-free, then see the price and gasp.  $8 for a half air-filled bag of healthiness?  I think not.  I was in sticker shock and I couldn’t believe the amount that was being charged to live a healthier lifestyle.  Mind-boggling.  So, I buy in moderation, eat in moderation, and try to make the darn stuff last as long as possible.

I saw something on Facebook last week that had perfect timing because I could so relate.  It was an article from the Huffington Post website entitled, “Surviving Whole Foods”.  I especially like the bit about recycling bags.  Check out the link below.

http://www.huffingtonpost.com/kelly-maclean/surviving-whole-foods_b_3895583.html

A BEACON OF LIGHT

On Day 5, my husband and I started desperately thinking about restaurants out there that could suit the ELBCEC.  We like to eat out and already by Day 4 we were craving an eating out experience.  Then it dawned on us, Chipotle!  Do you hear the angels singing?  We do, and it’s magnificent.  We called Chipotle to check out what oils they use to cook with.  After some investigating, we deemed it safe.  Hallelujah!  REAL food.  I got my burrito bowl to-go and rushed home.  I had to alter my usual a bit.  No sour cream or cheese, but I didn’t care.  As I shoveled in the brown rice, beans, grilled veggies, guacamole (to die for), tomato salsa, and lettuce, I happily thought to myself, “I’m gonna make it.  I can totally do this thing!”   

SATURDAYS

Other than Day One, Day Two, Day Three, and Day Four of the ELBCEC Challenge being extremely hard, Day 7 was definitely one of the hardest.  It was Saturday.  I love Saturdays!  I get to eat breakfast with my daughter.  Sometimes breakfast includes a trip to Krispy Kreme and I love every minute.  I don’t get to enjoy many meals with my son, so taking my daughter, Sydney, out for a meal or treat, is really a treat for me as well.  When raising a child with EoE, food can easily become “the enemy”.  With my daughter, who is EoE-free, I get to remember that food isn’t all bad.  In fact, there can be lots of joy in food.

So, Saturday was here and it quickly dawned on me that I was not going to be able to partake in my usual treat with Sydney.  My willpower was dying and I got a bit sad.  I blame it on the sugar withdrawal.  I was ready to cave, but quickly reminded myself why I was doing this. 

FOOD ENVY

Instead of making my day about eating, I got a chance to go to a bi-annual event called the “Springfield Vintage Marketplace”.   It’s an event where vendors and antique stores come from all over the place to sell antiques, furniture, repurposed items, etc.  I love all things vintage and look forward to the event each September and May. 

My husband kindly let me check out the event for the afternoon, even though the The Ohio State Buckeyes were playing.  Yes, I have a very nice husband.  I happily started exploring once I got there, then was quickly met with my own personal food haven.  I hadn’t even thought about being faced with food when I left for the event.  There were food vendors everywhere selling all kinds of delicious yumminess, all of which I couldn’t have on the ELBCEC.  I cursed quietly to myself.  And I’ll admit, a bit tearful as I had to pass up the ice cream vendors, candied apples, fries, elephant ears, chocolates, etc. etc. etc.  I kept my distance from the food vendors and their enticing smells, however I had to still face the people walking right by me and around me with their plates full of all things delicious. 

That was rough.  I forgot how so many events out there really effect kids with EoE.  Everyone walking around with food that are denied to kids battling EoE.  I didn’t think it was fair to have to pass all that up and I childishly wanted to stamp my foot a bit.  I refrained because I didn’t want other shoppers to think I was a complete weirdo.

WEEK TWO

Starting out Week Two, I’m in a much better place.  I’m not so overwhelmed, I’ve lost a few pounds, I’m feeling good, and I’m starting to get some energy.  I’m also, thankfully, not so wrapped up in food.  The two Virgin Diet shakes per day now go down to one a day.  The shakes aren’t so bad, but it will be nice to actually eat something for a meal twice a day now.

The first week was all-encompassing.  It was everything.  It was all I thought about because I was starving, moody, craving unhealthy foods and bitter.  I know the bitter part is a bit confusing.  After all, no one was making me do this but myself.  But it was challenging and hard and I desperately wanted my usual eats.  But through sheer will power, I made it through the first week and I’m a much better person because of it.

Week Two is promising.  I’ve stopped thinking about food as much.  In fact, I almost skipped dinner on Day Eight without even meaning to.  I just wasn’t that hungry.  I used to live each day finishing one meal and immediately starting to think about my next.  Food isn’t such a focal point and I’m becoming okay with sawdust snacks mixed in with an apple or two.  They start to grow on you.  Over the next few weeks, my quest will be to find non-sawdust snacks.

“You are what you eat” is a quote that I’m actually starting to believe in now.      

21-Day Food Challenge Week One: The Hunger Games

THE DAY BEFORE

I suppose that in hindsight I shouldn’t have gone on a binge-eating spree of all things “insanely bad for you” in my hometown the day before.  I just couldn’t help myself.  I treated myself to some Starbucks in the morning on the way down to my hometown at 5:30AM in the morning.  I had to be at my parents house at 6:30AM to help set up for a garage sale, so Starbucks was definitely in order. 

Coincidentally, the garage sale I was helping to set up for was a fundraiser where half of the proceeds would be donated to support research for EoE.  We had a great day.  The weather was beautiful and we raised close to $500!  It was also a day of lots of eating, for me anyway.  I started out the day with the most delicious cream-filled donuts from one of my favorite bakeries.  Lunch consisted of roast beef and fries from my favorite fast-food non-chain restaurant in town.  In the afternoon, I stopped in to Dairy Queen to see my mom and to order my favorite ice cream treat, the Chocolate Old Fashion Soda that only she can make just right.  I topped off the day with a pizza from this hole in the wall place that only townies can truly appreciate.  Best. Pizza. Ever. 

Chocolate Old Fashion Soda - yum!

My mom also kindly brought home a cookie dough Blizzard as a treat for my hour-drive home.  I was so stuffed at that point, but I plowed through it… well, half of it anyway.  My mom and sister evidently laughed at the eating display I put on that day after I left.  According to my sister, I was acting as if I was about to have my last supper.  Ironically enough, that was exactly how I felt.

DAY ONE

Day One was not pretty.  I’ll just put that out there.  I woke up that morning, a bit nervous and excited.  Although the excitement quickly died down as I realized what my diet was going to look like.  For breakfast and lunch, I had the Virgin Diet shake.  The shakes are recommended for breakfast AND lunch for the first seven days.  The shake consists of the following ingredients:

§         1 cup unsweetened coconut milk

§         ½ cup to 1 cup organic frozen berries

§         1 cup frozen spinach

§         1-2 scoops vegan pea rice protein powder

§         1-2 Tablespoons of flax seed/hemp seed/chia seed

§         Ice

I bought the Ninja blender last week and it does the trick of mixing it all up into a smoothie.  As for the flavor?  I’m not quite ready to discuss it.  Evidently it’s an acquired taste.  I asked my husband what he thought about the shake.  He replied, “I thought it was going to taste a bit more like berry, and not so much like grass.”  I concur, my dear husband, I concur.  I will say I’m pretty lucky that my husband, Nick, has decided to come along for the ride.  We’re both going through the challenge together as a way of offering support to one another and ultimately as a test for what life could be like for our son, Brady, some day.  Not easy, I can safely say right now.

Me and my hubby, Nick

SNACK TIME

After lunch, I needed a snack.  I had a laundry list of foods I wanted for my much needed snack, however I referred to the The Virgin Diet book for snack ideas.  The result was “kale chips”.  Evidently it’s as close to potato chips you can get on an organic, top 6 plus sugar elimination diet. 

  

I bravely put together the kale chips.  I cut up the kale leaves into 1-2 inch pieces, drizzled the lettuce leaves in a little bit of extra virgin olive oil (EVOO), and sprinkled sea salt on top.  I put the “chips” in the oven for 10 minutes before turning them over for an additional 10 minutes.

At around minute 7 or 8, Brady looked over at me in our family room and said, “What is that smell?!”  He even buried his face into the blanket.  Brady never complains of smells when I cook.  So, it’s incredibly ironic that the first time I make a safe food for him in the house, he immediately complains of the smell.  Brady was so offended by the baked kale that he even went into another room to “escape” the heinous smell coming from the kitchen.  I also came to the quick realization that Brady was absolutely right.  I had successfully stunk up the entire house.  I put on our Scentsy warmer to no avail.

My husband and I gave the kale chips a solid effort.  In all honesty, they’re not that bad.  Really!  I could actually learn to like them.  They’ll never be a Lays potato chip, but a pretty decent and very healthy alternative.  However, because the house smelled like something had died, my husband and I promptly decided that a bike ride with the kids was in order.  A very long bike ride far, far away from the house stinking of baked kale. 

Kale Chips. Believe it or not, must tastier than they look.

DINNER

Well, I’ll be honest.  I didn’t think this challenge out very well.  I didn’t order The Virgin Diet recipe book until last Thursday and I should receive it this week sometime.  I dutifully went to Whole Foods and shopped the organic section at Krogers to fill up with the must-haves for our pantry, freezer and frig.  However, I didn’t think about the actual recipes.  I guess I’m so used to throwing stuff together.  But the items I bought at the store were like a foreign language and I had no clue what to actually do with them.  Details, details.  In the end, I decided on quinoa pasta, tossed with EVOO, basil and sea salt.  My husband and I were absolutely famished by then and anything would have tasted good at that point.  I think I may have even caught my husband licking the bowl.  I’m not judging though because I thought about doing the same thing myself.  Desperate times call for desperate measures.  We were starved!

HUNGER GAMES

By the end of the day, I felt like I was personally going through my own Hunger Games.  However, the odds did not seem to be forever in my favor.  I was not feeling that well by the end of the day and felt a bit shaky.  I just wanted to go to bed… even though it was only 8PM.  And as predicted, I was grumpy.  Very, very grumpy.  But I didn’t cheat, not once.   However, if Katniss were a real person, I don't think she would be very impressed with my moaning and complaining of being hungry.   

This 21-day challenge is SO much harder than I thought it was going to be.  I have no doubt the coming days will be even harder.  But that’s the point.  It’s hard to eliminate all top six food allergens out there because it feels like they exist in almost everything!  Temptations lurk around every corner and those are so hard to ignore.  However, I have already discovered that this really is making me look at food very differently.  I am so personally affected by this diet so far and I have such an appreciation for what many kids with EoE go through.  And I’m only on Day 3! 

My goal for the next week is just to survive.  And of course, learn recipes!  I will somehow try to make these odds work forever in my favor, at least for the next 19 days… but who's counting???

The Start of an EoE Mama Food Journey

THE VIRGIN DIET

I am about to embark on a journey of my own, albeit a short journey at that.  You see, my journey will only last 21 days, whereas my son’s journey is a lifetime journey full of challenges, hiccups, ups and downs, failures and successes.

A new co-worker/friend recently turned me on to a book entitled, "The Virgin Diet", by JJ Virgin after hearing about my son’s battle with EoE.  I had never heard of it, but decided to give it a shot after reading the premise of the book.  This author suggests eliminating the top 6 food allergies out there including gluten, egg, soy, corn, dairy and peanuts.  This diet also includes the elimination of a 7^th component, sugars and artificial sugars/sweeteners. 

Immediately I was intrigued with this diet because of the elimination of the top six food allergens that coincidentally Brady has an intolerance to each and every one.  Right now Brady receives most of his nutrition through Elecare Jr. formula, a hypoallergenic formula, that eliminates his allergies to wheat, corn, soy, milk, eggs and peanuts from his diet. 

FEEDING THERAPY RECAP

Not only does Brady have EoE, but he also has a severe feeding sensory disorder.  In other words, Brady is afraid of food.  Even to get him to “touch it, kiss it, lick it” is a challenge most days.  We put Brady in feeding therapy at 2.5 years of age and stopped just before he received his feeding tube a year and a half ago.  In total, Brady was in feeding therapy for two years with not a lot of progress.  We took a much needed break from therapy, mostly to adjust to life with a feeding tube.  We called Nationwide Children’s Hospital in Columbus to start up feeding therapy in spring 2013.  Brady was put on a waiting list and we finally got a call last week that he will be starting feeding therapy this week!  Hurrah!

THE YEAR OF NO PRESSURE

Although Brady has adjusted brilliantly to his new feeding tube this past year, my husband and I made the mutual decision to stop forcing Brady to eat food at the dinner table since most of his nutrition was coming through the g-tube.  When Brady underwent g-tube surgery in the spring of 2012, he was grossly underweight and our main focus this past year has been to get weight on, and keep it on.  Keeping the weight on is much more challenging than it may seem, especially when battling EoE.  Even though Brady is on a specialized formula, he still flairs with his disease and vomits occasionally each month. 

So, with the focus purely being on weight gain, we decided we all needed a break from intense feeding therapy… however, because we made that decision, I will admit that we took several steps backwards with Brady’s willingness to eat food.  Brady is perfectly content to get all of his calories through his “tubie”.  He rarely wants to eat a meal with us and would rather just get a bolus feeding through his tube instead.  So, this became the “Year of No Pressure” where my husband and I simply didn’t force the issue.  Right, wrong, indifferent, we ended up digging ourselves into a bit of hole with Brady.   



Daddy giving Brady a bolus feed



BREAKING OUT THE BIG GUNS

As Brady starts feeding therapy back up this week, I know it will be a long road to get back to where we were before the feeding tube insertion.  Now that our much needed break is winding down, I feel refreshed and rejuvenated and most of all, motivated.  I say, bring it on Brady!  I know you won’t like therapy, at least not very much at first.  I know you won’t like sitting down for breakfast, lunch and dinner.  I know you will pitch a fit, scream, and cry about not wanting to eat.  And now that you’re five years old, you have this special and uncanny ability to manipulate your way out of most situations. 

I will be the first to admit that trying to decipher Brady’s complaints of “tummy pain” is quite difficult.  Some days it’s simply an excuse to get out of trying a new food.  Other days, his complaints are quite true and real and heartbreaking.  I will just need to learn to start trusting in the process and my gut.

THE 21-DAY CHALLENGE

It’s ironic that this book fell in my lap around the same time Brady is to start up feeding therapy again.  I will say I have definitely been enlightened by reading The Virgin Diet.  It was a huge wake up call and the timing couldn’t be more perfect.

I have decided to live out my own 21-Day Challenge that is recommended from the book, but also translates to my own personal “Eat Like Brady Could Eat” Challenge for the next 3 weeks.  This is gonna be tough.  Really, really tough.  Most people who know me also know I have a dear love of food.  Especially the not so healthy foods that lurk around every corner.  This will really be like turning over a new leaf for me.  A new, pure, organic, healthy leaf… with no additives, and in my mind right now, no fun. 

Gone is the Diet Coke.  HUGE sacrifice.  Gone is my Splenda.  Gone are the sweets that call out to me after each meal.  Gone is my beloved DQ ice cream that I have grown up on.  In my opinion, you just can’t beat an Old Fashion Chocolate Soda or Chocolate Chip Cookie Dough Blizzard.  Good bye my sweet vanilla soft serve, oh how I will miss you.

Even my coffee will need to undergo a transformation.  No more Starbucks Grande 2-Splenda Lattes.  No more dark roast coffees with cream and Splenda.  I will still get to brew my beloved dark roast coffee, but instead of cream and Splenda I will be using coconut milk and just a tiny, tiny bit of organic Stevia.  Hmmph.  That sounds almost painful right now and the exact opposite of tasty.  I absolutely cannot drink coffee without just a little bit of sweet though.  I have my limits.

My goal is not to lose weight, although shedding just a few pounds is a bit of a bonus in all of this.  Who wouldn’t like to lose a few extra pounds?  The author says most people lose up to 7 pounds in the first 7 days of the challenge.  Hmmm, we shall see.  I want to give the challenge an honest, true effort with absolutely no cheating.  That last part might just kill me, but I keep reminding myself that Brady absolutely doesn’t have the luxury of cheating everyday, because if he does, vomiting and stomach cramps and suffering will mostly likely ensue.

I’ll be blogging about this journey over the next few weeks… most likely in short snippets.  Prepare for some grumpiness next week.  I hear the first few days are the hardest.  I have a feeling I’m outside of the norm because I visualize the entire 21-days as being extremely difficult. 

I start the challenge, Sunday, September 15.  I’m getting ready to have a glass of Cabernet to toast to this new lifestyle.  I won’t be able to drink any alcohol over the next 21 days, so this glass will be my last for awhile.  So, cheers to a healthier life!  That sounds a bit counterproductive, but I’ll happily sip away anyway.  :)

THE FUTURE

Once I get through the 21-day challenge I envision incorporating this lifestyle into most, but probably not all, of my daily eating.  I’d like to find that perfect, happy medium someplace in all of this.  My hope is that with the start of feeding therapy with Brady, we will start to introduce safe foods, many from the Virgin Diet recipe cookbook (and other resources) and incorporate those foods into our family eating experience.

It would be nice if we could all sit down as a family and eat the same foods.  However, I’m a realist and I know that cutting out all 7 recommended food groups is just not going to happen 24/7.  I imagine there will be an occasion that we will order a pizza for dinner and Brady will eat something else.  However, that “something else” will also be eaten by the entire family as well for that meal.  I don’t know if this will work, but I’m going to give it shot.  And maybe we'll get to a place where I'll be making a "safe" pizza for Brady and our entire family to eat.  One step at a time.  One day at a time.

It’s not “normal” to eat like this.  I know.  In fact, I remember having a few eyebrow raising conversations with others in the past who are on special organic diets and wondering in awe how they do it.  However, since Brady has been diagnosed with EoE, I have no idea what “normal” is anymore.  We’re just trying to find our way in the meantime.

Diving into the Deep End

THE WONDERFUL WORLD OF WATER PLAY

This summer was the summer of water recreation.  We couldn’t get enough of it; mostly because we were so deprived of it the summer before.  Brady had an NG feeding tube the summer of 2012 from May – July, then a PEG G-tube insertion from July – November.  He had his mic-key button surgery in November which allowed his world to open up to the wonderful world of water sports.

When the summer of 2013 came around, we were ready.  We were more than ready as we had our first beach vacation scheduled for mid-June, a new inflatable pool for the backyard, and swim lessons scheduled for July.  It sort of felt like we were taking back control over our lives.  This disease, the setbacks, the inconveniences of life with EoE, and feeding tube were no longer going to rule.  We were back.  And it felt good.

Brady's first time in the new inflatable backyard pool



Sydney's first time in the new inflatable backyard pool



 

TADPOLES

I enrolled Brady (age 5) and his little sister, Sydney (age 3), for their first swim lessons.  They were both in the “Tadpoles” class for ages 3-6 beginner swimmers.  The first day of swim lessons brought anxiety and excitement.  To be truly honest, it was mostly nerves for me.  Sydney I wasn’t as worried about as I saw her take quite easily to the pool earlier in the summer.  For Brady, it was a different story.  Water = sensory.  Brady doesn’t do well with getting his face wet and my biggest fear was around him accidentally getting water in his mouth, or even worse, swallowing a bunch of water at one time.  That simple act could easily send Brady into a fit of coughing and inevitably, vomiting.  From there it could be a downhill spiral with Brady becoming afraid of swim lessons or the pool.  I was clearly getting ahead of myself, but it seems a mama’s worry never goes away, no matter how hard I fight against it.

It came as no surprise when the first class started and Sydney immediately jumped in and did all the instructed activities.  Her smile was infectious as she laughed and giggled her way through each activity.  I looked over to where Brady sat on the side of the pool, unsure of himself, and even more unsure of the water.  He looked pretty miserable as the instructor guided him around the pool as he halfheartedly kicked his feet.  It’s in these moments I try to push away the sadness that threatens to overcome me.  It’s sometimes hard to see one child, the younger one at that, flourish and shine in an activity, while the other more mature child struggles.

  

Brady not enjoying the kicking activity at swim lessons

Brady doing much better with kicking in shallow waters

I know that some kids just enjoy the water more than others, and that could very easily be the case here.  But sometimes I wonder if some of Brady’s struggles are the side effects of this crazy EoE disease.  Interestingly enough, Brady seemed to become more comfortable with the pool with each passing swim lesson.  Sydney, on the other hand, declined going down the “big” water slide and trying out the diving board.  Brady tried it all and I was so proud of him by the end of the two-week class.  Neither child was brave enough to go under the water just yet.  There’s always the summer of 2014 to look forward to more underwater adventures.

Sydney and  Brady loving pool time

Sydney loving pool time... our water girl.

REVELATION

As Brady and Sydney progressed through their two-week swim lesson class, I began thinking about how far Brady has come in just a little over a year with a feeding tube.  I suppose with all the water activity we participated in the past few months, Brady’s mic-key button was front and center.  It’s not that I ever forget that he has a feeding tube, more like “out of sight, out of mind” some days.   While Brady was at the pool, splash pad, or playing in the sprinkler this summer, the mic-key button was exposed and it made me think.  It’s become such a part of him and a part of who he is.  I’ve given so much thought to how the feeding tube has truly changed our lives.

DIVING INTO THE DEEP END

                          

It was not long ago, April 2012 to be exact, that my husband and I were faced with the heartbreaking decision to move forward with a feeding tube.  It felt exactly like diving into the deep end.  At night.  With a blind fold.  A total free fall that felt out of control and full of fear.  The water was cold and uninviting and I wasn’t sure if I would ever warm up.  After the NG tube insertion, we went through some pretty dark days as we adjusted to medical supplies, nighttime feeds, and the inevitable, tortuous reinsertions.   My husband and I learned to tread water very quickly, although there was a lot of exhaustion involved.

Brady braving the deep end




Okay, so technically Brady didn't jump into the deep end.  But he was brave enough to be passed down into the deep end.  Baby steps.

  COMING UP FOR AIR

By the time we reached Brady’s PEG g-tube surgery in July 2012, it felt a bit like that moment when you take that flying leap of the high dive and there’s no turning back.  Perhaps it was because of all the training we had with the NG tube that we were able to come up for air much faster this time and catch our breath.  Yes, it was a transition, but the PEG g-tube made Brady’s life much easier and more normal.  Whatever “normal” is. 

This time also marked a sense of calm with the realization that we were headed in the right direction with weight gain and tolerance of both nighttime and bolus feeds.  This also marked a time in this journey where it felt that the worst was behind us because for so long we had fought against a feeding tube insertion.  We had all survived the NG tube, the PEG g-tube and mic-key button surgeries.  Check, check and check. 

PERFECT 10

Now that Brady has had a feeding tube for 14 months, we have seen HUGE progress.  In fact, in just a year’s time Brady gained 10 pounds. Our perfect, hard-fought perfect 10.  This 10-pound gain felt nothing short of miraculous as Brady has always had a difficult time gaining weight from birth up until the feeding tube.

I’ll admit, I was a skeptic in the beginning.  I had many mother’s of children with EoE or feeding tubes reach out and say they have never regretted their decision for a feeding tube insertion.  And now I can happily say that I too, am one of those people with absolutely no regrets.  I’m a believer.  This transformation in Brady over just a years’ time is undeniably extraordinary.

It was not long ago that I would hug him, hold him and love on him and I could feel fear squeeze my heart as I felt his bones protruding through his skin.  Now when I hug my little boy, I feel substance. I feel the meat on his bones.  I feel relief.  I feel success.

My husband and I decided Brady's hard work and accomplishment of weight gain would never go unnoticed.  When Brady hit the 40-pound milestone, we threw him a "40 Pound Party", candles and all.  I was overcome with joy as I saw Brady blow out his 40 Pound candles and make his wish.  (I know what my wish is for him and for the many kids surviving with EoE.)  

40 Pound Party!

Brady making his wish.

Brady is now up to 41 pounds, up 13 pounds from his initial feeding tube insertion in April 2012.  He’s grown several inches as well.  He looks like a totally different boy to me, especially with his cheeks filled out with a beautiful smile that I cherish.  He actually LIKES his mic-key button.  He’s quite proud of it and will show it off to anyone who asks.  Brady is happy, despite this horrible disease and life-changing events that has come across his young path.  He’s happy.  And that alone helps me to deal a little bit better.



Brady showing off his mic-key button at the beach

There's that smile.

UNCHARTERED WATERS

Someone asked me the other day how long Brady will have his feeding tube.  Like most families dealing with and struggling with EoE, this is unchartered waters.  We have no idea how long he will need the feeding tube for.  Our hope is to get Brady to eat his safe foods and eventually become less dependent on the caloric intake from his feeding tube.  For now, especially with the success of the tube, it’s sticking around for a while.  And that’s okay.  Brady is growing and has finally outgrown clothes he has been in for almost two years.  This mama is quite excited about school clothes shopping this year. 

I’m just grateful we took that giant leap of faith and dove into the deep end.

 

They're just apples!

THE PREDICAMENT

Last week I had my first real experience of being judged by another mom for food choices I have to make for my son with EoE.  I have read so many other versions of this experience by other mom’s sharing their stories on FaceBook and blogs.  I knew it was bound to happen eventually.

It’s that moment when the other person realizes that something might be different with my child and then I’m faced with the predicament… to explain or not to explain.   Should I go into some elevator speech (that I have not quite perfected) about how my son has many food allergies, has a rare disease called Eosinophilic Esophagitus, and that he has a feeding tube to supply most of his caloric needs?  Or just let it go, simply say he can’t eat that, and quickly move on? 

Inevitably, if I go down the elevator speech route, the person will look at me or my son with that “poor you” look and TRY to sympathize, even though they don’t have a clue as to what we go through everyday of our lives, nor do they really want to.  Or, they will try to almost physically remove themselves from the little “situation” they have gotten themselves into by having to listen to a mom with a child with special needs drone on and on and on about their woes.  It’s on the rare occasion that someone outside of my normal social circle will truly try to get it and truly listen and truly try to understand.  It’s on these occasions that I feel a sort of triumph that someone listened and may help me raise awareness and not get all “judge-y” on me.  

FIELD OF DREAMS

About a month ago, my husband and I were overjoyed with our first foray into a life resembling normalcy when we signed our five year old son up for t-ball.  This was Brady’s first time being on any sort of team activity and his first crack at trying out baseball.  The first day of practice I may have gone overboard by making Brady pose for entirely way too many pictures before he and Coach Daddy headed off to the baseball diamond. 



Brady's first t-ball practice

Brady's "mean" face

Sweet Brady boy

My husband and I were simply elated that Brady was getting a chance to do something “normal” that didn’t have anything to do with food and he could escape to his field of dreams, and ours for that matter.  He loved his first practice!  Brady was quite impressed with his new baseball cleats and making “smoke” in the dirt of the field.  He was also quite impressive at picking up sticks and drawing in the infield while his teammates took their turn at bat.  Classic.  The baseball diamond is also right beside a railroad track and Brady (and the rest of his teammates) were quite ecstatic with each passing train sending practice into a halt until the train completely passed by.  Welcome to t-ball practice for kids between the ages of 4 and 5.  I loved every minute of it.



Brady making "smoke" running to home base



SNACK TIME

Once the team had practiced a few times, the coach handed out a sign-up sheet for each parent to bring snacks for each game.  Uh oh.  So much for our food-free activity.  However, I didn’t get upset.  This is just a part of life that we have to deal with that looks a little different for our son.  Most kids are so excited for snack time to arrive.  I know, because my daughter is one of them.  Snack time for Brady?  Well, he hates it.  It means he has to stop what he is doing to sit down and watch other kids eat their snack.  Not only does Brady have EoE, but he has a severe feeding sensory disorder that has only grown worse since having a feeding tube put in a year ago.  Brady would rather have his calories go through his “tubie” than eat.  We don’t even know what his “safe foods” are because we can’t get him to each much of anything. 

So, we do the best we can most days by encouraging him to eat the foods he is willing to put in his mouth.  Right now, we have about 3 foods that he is willing to eat including Goldfish, fries, and cheese crackers.  Technically, most of these foods have ingredients that Brady is allergic to but because he eats so little, we are able to get by without EoE flares due to the med regime Brady is on.



Brady in uniform before his first game



Batter up!

Go, Brady, Go!

THEY’RE JUST APPLES!

Last week, I had a first when a mom got all “judge-y” on me.  It was after Brady’s t-ball game when the mom began passing out snacks to all of the kids.  She had brought apple slices and apple juice.  Brady refuses to try either, even though we have relentlessly tried.  Brady will only drink water and apples are still a scary food for him. 

So, then I was faced with the predicament – to explain or not to explain.  It was busy, I was tired, it was hot, and I was ready to pack up and go home.  I decided to go with the not to explain option.  When she began to hand Brady the apples and apple juice, I politely told her he can’t have those.  Technically, he probably could have them (we don’t know if they are safe or not since Brady won’t try them), but he could have tried. 

My sister was nearby and overheard the conversation.  When the mom looked at me like I had grown three heads after I said, “he can’t have those” the mom then looked at me completely disgusted and retorted, with a bit of an attitude, “They’re just apples!”  My sister then intervened and said again, “Sorry, he can’t have those”.  It was a good thing that she jumped in when she did because I was in a state of shock.  It was a simple statement on her part, but I felt so hurt and embarrassed and angry.  I felt attacked.  I felt judged.  I then went to a dark place.

It was the anger that quickly took hold of me as we left the ball field that night.  Anger at the other mom for being so judgmental.  Anger at myself for not trying to explain better.  And pure anger at EoE and this world that we live in.

What I wouldn’t give for those apples, to be “just apples”.  Those apples are the epitome of our existence.  We’ve been down this long road over and over again fighting for and against food to keep our son alive and as healthy as possible.  This daily struggle with fighting the good fight for my son to try, just try, something new has become exhausting and overwhelming. 

For some kids with EoE and allergies to apples, consuming those “just apples” would be the start of something horrible and unimaginable to parents with kids that don’t have EoE.  The flares, the vomiting, the diarrhea, the stomach cramps, the sleeping, the joint pains, the refusal of food after the flare, hospitalization…  could all be the result of eating “just apples”.

In her defense, I’m sure she didn’t mean anything by her comment.  Trust me, I thought all night and the next few days about what she said which prompted me to write this blog.  I’ve got to think that from her point of view, she thought she was providing a healthy snack to all the kids and my refusal of that snack for my son may have been insulting to her… or something.  I’m not sure.  I just wish she would have left her judgment and attitude home that day.  I don’t need that in my life.  So there, “Judge-y Mom”, how do ya like them apples?

It’s gonna get easier, I know this.  I will get better at reacting.  I will hopefully be able to let the anger go after incidences such as this.  I will perfect my elevator speech.  I will be more mature. 

Brady will start to eat foods someday.  Brady will overcome.  Brady will learn and be willing to partake in snack time. And who knows, maybe he will grow to like apples. 

Oh, how I would love them apples.