FNCE 2015!

A TALE OF TWO FAMILIES

The Bombacino's

Julie and Tony Bombacino have two children.  Their youngest, A.J., is four years old.  He's been diagnosed with cerebral palsy, global developmental delays, autism and epilepsy.  Due to his condition, he is still unable to walk or communicate.  He also eats through a feeding tube.  When Julie first started feeding him at home, he couldn't tolerate any of the formulas his doctor prescribed.  So, she started blending all his meals up in a Vitamix.  This proved to be time consuming, but it worked, so the family endured.

Julie and A.J., who is also Superman

Then, on a family trip to Disney World, while spending most of her time blending food for her son, Julie had an idea.  What if there were commercial, shelf-stable blended meals for tube feeders?  Not formula; REAL food, with REAL ingredients like she blended at home!  Julie went through all the steps of starting a business: work with nutritionists and food scientists to develop meals and get them approved by the USDA, get investors and launch a crowdfunding (Indiegogo) campaign to raise money and awareness, find a factory in the U.S. that could mass produce each meal, develop a website and marketing campaign, and I've probably missed a few dozen more steps she went through. Around January, 2014, the Bombacino's dream became reality and the first Real Food Blends started shipping out to eager customers.

Coming next month in powdered form!

Fast forward to today.  Real Food Blends has grown dramatically.  The meals are approved by most insurance and starting to be accepted in hospitals.  A new meal is coming out next month (Turkey!). Julie and Tony are incredibly busy.  Meetings with insurance companies, hospitals, doctors, nutritionists, dietitians, and individual customers have them criss-crossing the country with little time for themselves.  On top of this, they still have to focus on A.J.  He still has seizures, still can't talk or walk.  They still need to bring him to see various specialists both near and far from their home in Indiana.  A.J. is the C.I.O. (Chief Inspiration Officer); they started this whole thing because of him. They pour so much love and support into their tube-fed son, and now they've taken on countless other tubie children and adults who rely on Real Food Blends for their nutrition.

Forget the meals; how do I get a Real Food Blends chef's coat??

The Liebenow's

Brian and Betsy Liebenow have one kid, Grace.  She's eight.  The other day, the couple were sitting on the couch watching T.V. when Grace called down from the kitchen:

"Mommy!" ...no response... "MMMOOOMMMMEEEEEEE!!!!!!!!!"

"Yeah?!?"

"I'M HUNGRY!!!"

"Well, find something to eat!"

"WE DON'T HAVE ANYTHING!!!"

"We've got lots of stuff. Have a granola bar!"

"I DON'T WANT A GRANOLA BAR."

"Keep looking!"

"MOMMY, MY TUMMY HURTS BECAUSE I'M SO HUNGRY!"

"Fine. I'll make you some ravioli. JUST LET US WATCH THIS SHOW!!"

I'd say one of these couples isn't putting the proper amount of effort into parenting.                 


                                                                                  

Early this month, Julie and Tony were in Nashville for the Academy of Nutrition and Dietetics' annual Food & Nutrition Conference & Expo (FNCE).  Nashville isn't too long of a drive from where we live, so Julie asked if they could take Betsy and I out to dinner one night.  We were thinking, YEAH, sounds great!  Free dinner and we can spend a Saturday night in the 'big city' away from the in-laws!  Ok, maybe it was just me thinking that last part, but I told Julie that it would be awesome to meet them and learn a little more about the company.

Then Julie said that since we were in town, maybe we'd like to stop by the Expo for the day on Sunday and spend some time at the Real Food Blends booth.  She also said Real Food Blends was willing to pay for our hotel room for the night.  This overnight stay is sounding better and better! The FNCE is where registered dietitian nutritionists, dietetic technicians as well as many researchers, educators, students, nurses, physicians, pharmacists, clinical and community dietetics professionals, consultants and food service managers from all over the country gather to learn about the latest trends in nutrition.  The Expo happens in a different city every year, and this year it was in a huge room at the Music City Center in Nashville.  The day we were there, over 11,000 people were in attendance.  It's kind of a big deal.

Saturday afternoon, Betsy and I left Grace on a street corner to fend for herself and drove over to Nashville.  We checked into our hotel room, then met Julie and Tony for dinner at Puckett's, a really popular barbecue restaurant a couple blocks from where we were staying.  Thankfully, Julie had reservations because this is one of those places where it is impossible to get a table on a Saturday night without reservations.  Like pretty much every other restaurant we've been to, the wait staff at Puckett's were very accommodating.  When the first table they showed us didn't fit my syringe holder, they let us take another one that was thin enough for me.  I ended up getting the BBQ patter with a mix of pork, chicken and brisket.  The meal included sweet potato fries, baked beans, and coleslaw, but I left off the fries so my blend wouldn't get too thick.  I also got a Peach Ice Tea (like a Long Island Ice Tea, but peachy) because Real Food Blends paid for my meal and if there's one thing I'm good at, it's being a freeloader.

Would've been a good pic, but a weird couple photobombed me

The next morning, Betsy and I walked to Music City Center to check out the Expo.  It was so fascinating to see!!  It's like going grocery shopping, if there were two people standing behind each item in the store explaining why it's such a healthy product.  All the big food companies were there. Betsy and I only walked around a little bit, but some of the booths I saw in no particular order:  Kellogg's, Monsanto, Abbott Nutrition (makers of Ensure), the Sugar Association (ironically, this was at the booth next to Real Food Blends), Dole Fruits, Blendtec (didn't see the Vitamix booth but they were there), Campbell Soup Company, Organic Valley, Chick-fil-A (one of the more popular booths), Dr Pepper Snapple Group, Gluten Intolerance Group of North America, Kikkoman Foods, Nestle, NutriBullet, PepsiCo, StarKist, the Wild Blueberry Association, the Cranberry Marketing Committee, Pfizer, and Sun-Maid.  This is just a fraction of the 380 exhibitors at the Expo and most of them were giving out free samples, so you could graze your way through the conference if you were so inclined. 

The best part of the day, by far, was sitting in the Real Foods Blend booth and watching Julie and Tony changing hearts and minds about eating blended food through feeding tubes. Like I said, there were thousands of health professionals in attendence and many of them (most?) had patients with feeding tubes or they were students preparing themselves to work with tubies.  This was the third year that Real Food Blends had a booth at FNCE, so there wasn't quite as much disbelief from attendents on feeding tubies real food, but there were still those who insisted that blended meals were "too unsanitary" to use in a hospital setting or didn't offer the "total nutrition" that Abbott Nutrition touts with their formula products.

Julie and Tony spreading the gospel of real food

"Who's that hot tubie model at the RFB booth??" -overheard at FNCE 2015

I especially enjoyed sitting in the booth while Betsy pushed a coffee and Salmon, Oats & Squash meal through my tube.

Oh, Betsy is the hot model

I liked being able to tell people that I've been eating Real Food Blends since they started and the meals ABSOLUTELY sit better in my stomach than Ensure ever did.  I think bit by bit, the health community is becoming aware of the benefits of eating real food, rather than corn syrupy formulas.  Hopefully Betsy and I helped Julie and Tony on Sunday, but then we had to get back to our couch and starving child, while the Bombacino's continued making the world a better place.

Things I Want Right Now: "C is for..."

Can tubies gain weight?

Scratch that. I know we can gain weight. I've heard countless stories from tubie moms whose kids put on weight after switching from formula to blended diets.

What I mean is, can tubies get fat?

Believe it or not, that fat man is me on steroids in 2006. The bear is obviously on steroids too.

That picture is of Fat Brian and his friend, Fat Bear. I was on an extremely high dose of Dexamethasone (decadron) to try to combat the side effects of radiation damage. Decadron and radiation (and jaw surgeries too!) had a couple similarities: they suck and they were of questionable benefit. One of the side effects of decadron is that it caused me to put on weight really easily and it was nearly impossible to lose it.

Could I have avoided putting on weight if I had a feeding tube? Maybe you saw the headlines a few years ago about people trying to lose weight by eating through a feeding tube. Here's a more recent article about a doctor in North Dakota (Doctor Spencer Berry) who thinks feeding tubes are the answer for Diabetes: (click here). I like the quote from a different doctor at the bottom of the article: “To receive nutrition via a feeding tube is not a realistic long-term method of nutrition. Plus using a feeding tube for a prolonged period of time can increase a person’s risk of infections.” If I live to be 90--or rather, when my friend, Jesse Jones, lives to be 90--I hope she's still around so I can ask her about that.

I think I agree with Dr. Berry's critics though. Weight loss is about losing weight and keeping it off. Once those diabetic people have lost 100 pounds and the tube comes out, will they suddenly start eating well and exercising regularly? I'm thinking their first thought will be the same as my first thought if I ever get rid of this feeding tube, "I'm going to the grocery store, buying a tube of chocolate chip cookie dough, and I will not rest until that cookie dough has been consumed in its entirety. 'Murica."

All that 'gluten free no sugar' stuff is going right out the window. I'm not proud.

Once people get a feeding tube for weight loss, they'll have to keep it in or they'll slide right back into the diabetic life. So, since I have a tube permanently, does that mean there's no way I'll get obese? My opinion is that it's possible to be overweight with a feeding tube, but it's much harder. There's an obesity problem in this country because it's so easy to eat junk. Sitting on the couch watching the game? How about a 20 oz. Coke and a bag of Doritos!! Not enough time for breakfast before work? Stop for a few doughnuts at Krispy Kreme or buy a couple Pop Tarts from the snack machine in the office! Kids whining for dinner but nothing prepared? Order pizza, or better yet, make it a McDonald's night! We eat processed crap because it's more convenient. Or we do it because we're idle and have nothing better than to eat, so we choose to eat the best tasting stuff--the stuff with all the sugar and weird sounding chemicals in it. Even worse, we eat crap because it's less expensive than the healthy stuff.

Not so simple for me to eat crap food. I ate some doughnuts on occasion before I went gluten free. But there are extra steps there. Gotta throw it in the blender, get a good amount of fluid in the pitcher to thin the mixture, sit at the table to push it in (doughnuts aren't something I can casually eat on the couch or while I'm driving anymore), then flush with water. Granted, I've done this long enough to get the amount of time down, but it's still a whole production whenever I eat. Not to mention the fact that I don't taste what I eat, so where's the joy in eating a doughnut? If I'm going to take the time to make a meal, it makes more sense to make it healthy. Too much work to get fat with a feeding tube. Hard enough just maintaining the pounds I've got.

This is not to say that you can't eat an unhealthy diet with a feeding tube. My last post was all about sugar, and how sugar--mostly corn syrup--makes up many of the calories in processed formula for tube feeder. Having a diet with a large percentage of calories coming from sugar won't necessarily make you obese, but it does give you a whole host of other problems. Sugar is bad for you in so many ways. I really feel like I need to find a university study demonstrating why sug--

http://m.ajcn.nutrition.org/content/101/6/1144.abstract 

What the...Where did that peer reviewed study from The American Journal of Clinical Nutrition come from?? I think my health-conscious big sister somehow knew I was writing a post about cookies and sent the link all the way from her home in Germany!!! She further says that this article is, "Gold-standard research revealing the traumatic effects of simple, highly processed carbohydrates (sugar and flour and the products made from them) to your heart." She's got about 100 more studies showing how bad sugar is for you, but I actually just pulled that link off her facebook page and I'm too lazy to ask her.

So anyway, all this talk of the damaging effects to our body from sugar, both last week and this week, makes me hungry for cookies; how about you? It's time for another installment of "Things I Want Right Now!" I think I mentioned above that the first thing I'd do if I could swallow was eat a tube of cookie dough? The truth is, I'd drive straight here:

The happiest place on earth

Since a very young age, I've been crazy about cookies. Especially when they're soft, sweet, buttery, fresh from the oven. I'm drooling on my keyboard thinking about it.

Where did I learn this addiction?

My mom made some awesome cookies when I was growing up. Chocolate chip, snicker-doodle, sugar, apple sauce (yes, there are apple sauce cookies and they're delicious), oatmeal. But the best cookies by far? Mom's ginger snaps.

It's time to do something a little hypocritical on my blog. Something that is the exact opposite of what I was preaching about in my last post.

It's time to share a very unhealthy recipe. I'm only doing this so you'll see the types of things you shouldn't be eating. PLEASE PLEASE, whatever you do, don't run out, buy all the proper ingredients and make these cookies!!! Also, don't take pictures of yourself eating said cookies and absolutely don't send the pictures to me so I can vicariously enjoy the cookie consumption. Betsy really wants me to make chocolate chip cookies because they're her favorite, but I just use the Nestle-Toll House recipe for them so I thought I'd share my mom's ginger snap recipe instead. Betsy is the only person on the planet who doesn't like these cookies so I guess you're out of luck, babe, sorry!

--------------------------------------------------------------------
GINGER SNAPS

Ingredients:

2 cups flour                                   1 cup sugar
2 tsp. baking soda                          3/4 cup shortening
1/2 tsp salt                                    1 egg
1/2 tsp cinnamon                           1/4 cup light molasses
1/4 tsp ground cloves
1/4 tsp ginger

1 bowl of sugar

Directions:

Preheat oven to 375. Sift dry ingredients. In a separate bowl, cream sugar and shortening. Mix in egg and molasses. Add dry ingredients. Roll balls of dough in the bowl of sugar. Place on a greased cookie sheet, sugar side up. Bake for 9 minutes.
--------------------------------------------------------------------


Now, let's put those directions into action!! For this portion of my blog I really need someone to hel--

Look, it's Grace and some other strange kid!!

Where in the world did they come from?? All I did was think about cookies and Grace popped into the kitchen. Plus, our neighbor showed up with mixing spoon in hand. How does this happen?? I guess all you need to do to get your kids to quit playing Minecraft and spend time with you is make sugary, unhealthy treats with them!!! Parents, take note!!!

WARNING: flour has a tendency to fly out of the bowl when vigorously stirred!

The recipe also has shortening in it. Shortening was developed at the turn of last century using partially hydrogenated cottonseed oil. It was touted as the "healthy alternative" to lard because Mr. Procter and Mr. Gamble wanted to stick it to the meat industry. Listen to this podcast exploring the early history of Crisco; it's actually really fascinating. Today, Crisco is an unholy mix of soybean oil and palm oil, and butter is, surprisingly, a healthier alternative. Yet shortening makes the cookies softer and, although it doesn't give you that buttery taste you love in chocolate chip cookies, ginger snaps have enough other spices that you really don't need a buttery quality. Here's another interesting link on the science of fat and why it makes cookies taste so good, because I know you're dying to read more about fat!

"Stir, you little punks, or you won't get dinner again tonight!!!"

Besides adding butter, I also could've used gluten-free flour in the recipe so I could actually enjoy these cookies, but I made the decision to make it just 'like mom used to make' and keep it as unhealthy as possible. Also, I'm trying to cut back on sugar so I prefer to feed this poison to those I care the most about, like my only daughter (in my defense, she has the audacity to eat popcorn right in front of me).

Not only is there a cup of sugar in this recipe, but there's also molasses! Though, to be fair to molasses, it's actually not as bad for you as sugar. When sugar cane is processed to make refined sugar, molasses is the by-product, so it contains many of the nutrients from the plant that are lost during refinement. Plus, molasses has a lower glycemic load. I don't know what that means either, but apparently molasses is a safe sweetener for diabetics. I actually didn't have light molasses in the house, but I had black strap molasses (the type with the most nutrients so "yea me!"). It made the cookies look a little darker, but Grace still thought they tasted good.

Other than Grace, and some random neighbor kid who happened to wander by, who did I feed these sugar-bombs to? To my fellow disabled veterans at the horseback riding thing I do every Friday, of course! Also, to my in-laws because it seems like more of them are moving to Knoxville every day and I may have to resort to drastic measures to put a stop to them.


 

If I didn't have a feeding tube, all these would be mine

My 8 year-old daughter informed me this morning that she googled my name and found my blog. She told me she read every post and especially liked the one about Red Lobster because I made mommy look like a vampire. This made me: 1) suddenly very nervous about what exactly I said in my past blog posts (haven't there been a lot about alcohol??) and 2) frantically look up parental locks online so my kid doesn't wander into some porn site when I'm out of the room. So, Grace, I know you're reading this, so I thought I'd make you a special picture just from daddy:

Who's the scary monster now??

In response, she made this:

Not too bad for her first try

Put down that doughnut right now

Sugar is bad for you and we (I'm talking about Americans--I don't care about the rest of you people) have a sugar addiction. I'm not telling you anything you haven't already heard. The airwaves have been flooded with Washington Post articles, New York Times articles, L.A. Times, Fox News reports, CNN, MSNBC clips, no sugar diaries (or here's the shorter version), John Oliver clips, Jamie Oliver (no relation) TED Talks, other TED Talks, more TED talks, Lengthy University of California lectures, 60 Minutes segments, BBC News clips, American Journal of Clinical Nutrition studies, and other scientific studies about the dangers of sugar. That last link takes you to PubMed's website where a search for "sugar intake" articles published in the last ten years gives you over 13,000 results. I'm sure some of those are all about how sugar is the miracle drug that will cure cancer, but I'm equally sure the pro-sugar studies were done by scientists who benefited from the sugar industry (I'm talking about you, Dr. Pepper!!!). That reminds me, you really need to watch that John Oliver clip:

John Oliver #ShowUsYourPeanuts

So, sugar is bad and the government doesn't seem to be in a big rush to regulate it. It falls to us to rid ourselves of our sugar addiction. This can be extremely difficult, if not impossible, for some people though. And I'm not talking about those who are genetically predisposed to having a sweet tooth either. I'm talking about tubies. When I first got my feeding tube, my doctor prescribed a regimen of 6-7 Ensure Pluses a day. That's 132-154 grams (nearly a cup) of sugar every day. This is over 4 times the daily amount of sugar the American Heart Association recommends. Understandably, formulas can cause a sugar rush (glycemic spike) and resultant comedown after consumption.

Why do formula companies pack so much sugar into their products? I think there are a lot of different reasons for this. The main reasons, in my opinion, are taste, and because sugar packs a lot of calories and companies still operate under the belief that, "a calorie is a calorie." If a nutritionist mandates that patients consume 2,000 calories a day, and the food has to be liquid and not exceed a certain volume, the easiest (cheapest) way to pack in those calories is by adding corn syrup. Sure, Ensure has a lot of other nutrients ("26 Vitamins and Minerals!"), but from my standpoint, it's like they mixed a can of corn syrup with a Centrum Multi-Vitamin and slapped a label on it.

There are formulas out there for tubies with diabetes. Two of the main examples are Glucerna and Boost Glucose Control. These products have a higher percentage of fats with lower amounts of carbohydrates (only 4-6 grams of sugar in each, compared with 22 grams in Ensure Plus). The carbs have a lower glycemic index, so the sugar is converted more slowly before being released into the bloodstream. Plus, the diabetic formulas have more fiber to further slow the breakdown of carbs.

The drawbacks to diabetic formulas? For one thing, it's still added sugar. I have yet to find a commercial formula out there with no added sugar. This is because, if formula companies want to make any money off their product, they can't just market to tubies specifically, so they have to make a shake that tastes good. Therefore, if you're stuck on formula, but want to go on a sugar-free diet, you're out of luck. Another drawback to diabetic formulas is they're still not real food. Here's the list of ingredients for Boost Glucose Control:

DOES NOT CONTAIN: FOOD

So, specialized diabetic formulas have a higher percentage of fats with lower amounts of carbohydrates. The carbohydrates in diabetic formulas have a lower glycemic index so that the sugars are converted more slowly before they're released into the bloodstream. These formulas also contain more fiber, to slow the breakdown of carbohydrates even more. - See more at: http://oralcancerfoundation.org/nutrition/liquid-tube-nutrition.php#sthash.sWQaFVTq.dpuf

So, specialized diabetic formulas have a higher percentage of fats with lower amounts of carbohydrates. The carbohydrates in diabetic formulas have a lower glycemic index so that the sugars are converted more slowly before they're released into the bloodstream. These formulas also contain more fiber, to slow the breakdown of carbohydrates even more. - See more at: http://oralcancerfoundation.org/nutrition/liquid-tube-nutrition.php#sthash.sWQaFVTq.dpuf

Yep, whole lotta big words in there. Makes you appreciate commercially available blended meals like Real Food Blends even more. Hopefully, tubies are a large enough market that they can turn a profit!! Another drawback to diabetic formulas is that they're just that: diabetic formulas. If you don't have diabetes but would like to control your sugar intake, it can be harder to get insurance to cover the costs of all those cans of Glucerna you need every day.

If you're a tubie--or the caregiver of a tubie--and you're unable to switch from formula to blending your meals for medical reasons, then I am really sorry you have to stay on these commercial products with unrecognizable ingredients and too much sugar. I sincerely hope doctors, nutritionists, and pharmaceutical companies wake up to the fact that sugar is poison and fat isn't nearly as bad as everyone thought it was.

In light of all that we've read about the dangers of sugar, Betsy and I are working really hard to reduce, or even eliminate, sugar from our diet. In my case, going without sugar is simple. I'm completely off formula so the only sugar I get is what I put in my blends. Sometimes I have a gluten-free dessert or a dark chocolate bar, but it's not something I crave. I've already found foods, like nut butters or avocados, that are high in fat and give me the calories I need. If I want to stop added sugar altogether, the only thing I need to cut out is sunflower butter because my grocery store (Earth Fare) adds a teaspoon of sugar to it.

For Betsy and Grace, on the other hand, cutting out sugar--or even reducing it--is more challenging. Betsy and Grace don't eat gluten-free. Both of the main products with gluten--bread and pasta--have added sugar. All cereal at the grocery store has added sugar. Lunch meats have sugar.  Sugar is added to just about everything except unprocessed fresh vegetables and meat. Even more than Grace, Betsy can be a finicky eater. There are certain things she eats in the morning and all that stuff has added sugar. On one hand, she's fortunate she doesn't need to eat through a feeding tube, so she's not forced to drink multiple Ensures every day. I don't know how she'd do drinking one or more Ensures a day; probably better than I would. On the other hand, when I get a craving for a doughnut, there's nothing I can do about it. Putting a doughnut through my tube doesn't do anything for me. But Betsy can run to Dunkin Donuts anytime to satisfy her craving. We've made sugar so easy and cheap to buy that we might all need feeding tubes unless you can exercise a little bit of self-control.

So, put down that doughnut right now!!!

Not you, Homer. You can eat all the doughnuts you want.