Thursday, September 12, 2013

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 7th 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.

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