Month: July 2018

I’m so excited to announce the arrival of my latest book, The Quest: Forest of Realms!

Princess Zia has watched her people suffer in despair for an entire year. They have been enslaved by large, fierce creatures that arrived without warning from the dark and mysterious Forest of Realms. Desperate for the answers she needs to free her people, Princess Zia enters the Forest of Realms. On her heroic journey, Princess Zia discovers other lands and realms far beyond her wildest dreams.

She learns the story of the creatures who have taken over her land, and it runs deeper than she ever imagined. Will she be able to save her people? Written for older children, pre-teens, and the young at heart, The Quest: Forest of Realms is an adventure like no other.

The Quest: Forest of Realms weaves strong, positive messages about whole plant foods into its magnificent adventure. Inside, readers will also find many delicious, kid-friendly recipes that use only whole plant foods.

Additionally, a key character is tube-fed and communicates an important message about blenderized diets and the value of real food for tube-fed people. At just $2.99, this book is available for all to enjoy. Order your copy here!

You can also check out the first chapter of my FREE audio book, The Quest: Realm of Rebels! This book will be a FREE eBook, and every chapter will also be available in audio form for FREE. Listen to chapter 1 here. More chapters will be available in the coming weeks!

Interested in learning more about my books? Check out my page here!

One issue many blenderized diet families face is the fact that modern tube feeding equipment has been entirely designed around formula use. In fact, by their own admission, the new ENFit system was developed with the recommendation in mind that commercial formula be the preferred product to feed through a feeding tube. In other words, when ENFit, the most recently developed system for tube feeding, was being designed, whether a blenderized diet could be fed through the system was never a consideration.

While this post is not about ENFit (I will be writing about ENFit in August), I am bringing this up to demonstrate how little attention the medical device industry is giving to the fact that more and more families are preferring home blenderized diets of real food over enteral formula. Parents are often turning to syringes designed for the feeding and rehabilitation of squirrels, for example, because the syringes designed for feeding food to squirrels are of better quality than the syringes designed for feeding food to children. The medical device industry is not keeping up with the times, that much is clear. And families have endured a lot of frustration because of it.

So, I was extremely pleased to hear of a couple of people experienced in the medical device industry who noticed this and wanted to offer something better to tube-fed patients, especially for those who are feeding pureed food. After working in the medical device industry for many years, Brian Johnson and Fred Reuning both saw the market changing more and more toward blenderized diets and more natural nutrition products. Yet, no new delivery options were being developed with this in mind. Believing in natural nutrition themselves, they knew they could create a delivery system that is better than what is currently available. And that is what they set out to do. They branched out on their own, launched their self-funded company, and developed the bFed System.

Earlier this year, their bFed System was launched. I am IN LOVE. All our frustrating days of dripping food everywhere with syringes can now be a thing of the past. Imagine just packing up pouches filled with your pureed food when you are going out for the day, connecting those pouches directly to the g-tube extension, and feeding. This is now possible, thanks to the bFed System.

One mom mentioned she really liked that she could fit an entire meal into one bag (a bag can hold up to 13 ounces), it was less messy than syringe feeding, and it was easy to clean, much easier than she had anticipated.

Some people have noticed that it was a bit difficult to push the food through the extension, particularly with thicker blends. However, other moms have noticed if you insure all of the air is out of the bag, this problem is alleviated. If you turn the bag upright so the opening is facing up and squeeze the food up to the opening to remove any air prior to connecting it to the extension, pushing food through becomes much easier. Alternatively, hold the bag upright, attach the extension and push all air up and out so only food is in the bag and extension. Then, attach the extension to the feeding tube (much like you would prime the air out of a bag on a feeding pump prior to connecting it).

It seems if there is a lot of air in the bag, you have to push it a lot harder because you are pushing large air bubbles around inside the bag rather than pushing the food directly through the tubing. Still, if you use very thick blends, you may want to try a small sample kit to see if this system is right for you. Some that use very thick blends had a hard time getting the final ounce of food out of the bag. It seems in most cases, however, blends go through just fine, and the response to the bFed System has been largely very positive.

Another solution the bFed system provides is the ability to connect store bought baby food pouches directly to a G-tube extension. Many mothers, myself included, have sought out ways we could simply put a baby food pouch right into an extension, and we have gotten quite creative in the process. Throwing some shelf-stable baby food pouches into the diaper bag when going out for the day can be quite convenient. However, when you then have to squeeze all those pouches into a blender bottle, stir them up, suck it up with a syringe, drip food everywhere while moving the syringe from the blender bottle to the extension, and then, feed, that convenience pretty much goes out the window.

Now, you really can just attach a baby food pouch directly to the extension without tremendous feats of improvisation. The bFed system has an adaptor that allows you to connect a baby food pouch directly into an ENFit extension. Also, if you do not wish to use ENFit, an adapter is available here that allows you to connect it to other extensions as well. Some people like ENFit and other people abhor it. I appreciate that this company offers both options so people can use whichever system they prefer rather than requiring everyone to use one system or the other.

If you use Nourish, Liquid Hope, or Real Food Blends, you can pour the product into a blender bottle with any liquid you would like to add, shake the bottle up to mix, and then pour it right into the bolee bag from the blender bottle for no-mess feeding.

What I am most pleased about with the bFed System is the selection and freedom of choice the company offers (something rarely extended to the tube-fed community), their acknowledgement that better systems are needed for people feeding pureed food through feeding tubes, and their desire and efforts to provide those better systems to the tube-fed community. The first generation of the bFed System was first shipped out in February of this year, and the second generation is already in development.

Their website is filled with pictures of wholesome, nutritious foods rather than sugar-laden beverages, and their slogan in their logo is, “Freedom to Choose.” In this way, they truly stand apart from other companies in the medical device industry.

I have personally spoken with Brian Johnson on multiple occasions, and I do feel he is genuinely interested in hearing consumer feedback so they can develop the best system possible. Home Care Supply companies can supply the bFed System as part of your monthly supply kit (they can bill it under the gravity billing code). You can also buy directly through their website here.

I give a two thumbs up to the bFed System and encourage you to give it a try and to support the efforts of this company to make tube feeding easier for all of us.

*I received no compensation, neither financially or materially, for writing this blog post.

Hey, everybody! So, this is my first video in a series that I hope many of you will watch or listen to because I do think you’ll really benefit from it. I figured in the meantime, you’d enjoy some nice scenery while you listen in, so I’ve got some pictures of some really colorful foods and beautiful blends that were shared with me that really have nothing to do with what we’re talking about, but they’re nice to look at.

This video series is going to be all about how to research a subject you are interested in learning more about. I am going to teach you a really basic skill set that you will allow you to look up the scientific data on nearly any subject and find out what science has revealed about that subject.

I hear so often, “Oh, it’s so hard to figure out what is true and what is right when there is such conflicting information out there.” But, when you go straight to the scientific data, the nice thing is you don’t have to worry about who to believe. I’ve had conversations where I was sharing what scientific studies revealed about a particular subject matter, and I’d then be asked, “Well, why should I listen to you over my child’s dietitian?” for example. And my answer to that really is that you should not listen to me over your child’s dietitian. But, you also shouldn’t listen to your child’s dietitian over me. You should listen to the science.

Another question I’m often asked is what credentials do I have to lend support to what I’m saying. But, science is not based on credentials. It’s based on data. And if you have the right skill set, which pretty much anyone who is able to read can learn, you can look up that data for yourself and evaluate it. If you’re the parent of a child living with special needs or really if any member of your family is living with an illness or some sort of medical issue, I cannot overstate how invaluable this skill set will be for you. You are absolutely not at the mercy of someone’s credentials. And I’m not at all speaking against education because those credentials do mean something.

But, if someone is giving you advice that contradicts the scientific data that we have, that advice should be ignored no matter what credentials a person has. You have the ability to question what you are told and to do it in a way that is responsible and that makes you a more informed person.

Now, a lot of people find information like this to be a little overwhelming at first only because it is not an area that they have a lot of experience with. So, I’m offering this information in both a video that you can listen to, and I’m also going to post the transcript of everything I’m see here below as well. I know some people learn more easily through listening and some people learn more easily through reading. So, I’m offering both and you can choose which you prefer. Or choose both and read along as you listen. It’s up to you.

I hope by the end of this series, you will feel empowered question what you are told and to look up and evaluate the data for yourself.

So, for this video, I’m just going to give an introductory explanation about different ways of learning and the significantce of science when learning about the world around us.

So, there are different ways we learn information. And we’re going to go over those right now.

One way is called tenacity. Tenacity refers to repeatedly hearing the same piece of information again and again and eventually, coming to accept it as true simply because we have heard it so many times. To give an example of this, for years, the idea has been spread that humans only use 10% of their brains and that 90% of their brains just lie dormant. This is absolutely false. However, many people believe this to be true simply because they have heard it so many times. Likewise, there are many things taught to us by our parents as we are growing up and because we grow up hearing whatever it is they’re telling us over and over, we’ve just come to accept it as truth simply because we have heard it so many times.

The problem with this is that when that information that’s repeated to us is wrong, we have a tendency to believe something incorrect simply because it was said to us many times. We see this a lot in the blenderized diet community, actually. How many of us have had a dietitian or a medical professional just hammer onto us how super important complete nutrition is? And then we are pressured to insure virtually every single meal we feed our children is a perfectly concocted blend that accounts for every single nutrient in perfect proportion.

From our perspective, we come to see pretty easily that this is unnecessary and actually kind of silly. We see that no one really eats this way, not even the people telling us this information. So we realize this idea of complete nutrition really is incorrect. However, a lot of people trained in this area involving tube feeding have been told over and over and over about how important precision diets or complete nutrition is for tube-fed people. And even though there is no science to support that, they’ve just heard it so many times that they have come to believe that it is true regardless of how illogical it is and how unsupported it is.

So we can see how this is not really a very reliable way of learning, and it’s good to always evaluate our own beliefs and consider whether we believe something to be true because we have solid reasons to or simply because we have heard it many times.

Another way of knowing is through authority. We hear something from someone we consider an authority in that particular area and then, just accept it as true. We see this in the tube-fed community quite often as well. It’s really hard for a lot of us to go against what a doctor or someone with specific credentials say even if we are sure they are wrong based on really solid information. And this is because of our tendency to turn to authority.

Now, this does not mean that people with credentials are always wrong and we shouldn’t care about what they say. We should certainly hear out their advice and consider it because they do have a lot of knowledge in their area of expertise. However, we also should not blindly follow them simply because they have specific credentials or something else that makes us view them as an authority. Because no matter how much knowledge anyone has, they can still make errors. They’re still humans, they still have their own biases, such as what I just talked about with tenacity as a means of learning. So, it’s always good to double check what we are being told.

That is why I always tell people you don’t need anyone’s permission to feed your child what you choose. Your child’s medical team is there to advise and recommend and, certainly, always hear out their advice and recommendations. However, it’s always important to be well informed and to consider that advice in the context of all the information that is available before making a decision. And the decision should always be yours, not just someone who is in authority.

Another way of learning is through experience. Now, you’d think that by experiencing something yourself, you’d fully understand that information you gained, right? But, this is not necessarily true. And that’s because your individual experience isn’t necessarily indicative of patterns that happen in a larger group. To give an example, have you ever heard of someone who was a really heavy smoker and lived to be in his 90s? That person’s experience may teach him that smoking actually does not cause cancer and will not shorten your life. But, we know from data collected on much larger groups, that that would be entirely incorrect.

Also, our own memory and interpretations are not nearly as accurate as we often seem to think. A big problem crime investigators, for example, run into when there are many witnesses to a crime, is trying to sort out the truth after talking to the witnesses. All of those people will have seen the exact same incident, yet have completely contradictory versions of it and information. Some will say the person of interest was wearing a red shirt, while others will insist it was blue. Even our own accounts can contradict each other.

I once witnessed a woman get hit by a bus while riding her bike. The bus company called me the next day to interview me. I didn’t hear anything about the incident for nearly 2 years when I was called in for a deposition and interviewed again by both the bus company’s lawyer and the woman’s lawyer. I answered questions that day that I was absolutely sure were correct and precise and exactly as I had seen that day.

When I finished talking, the lawyer for the bus company handed me a transcript with some highlighted sections and asked me to read those sections. I was just so embarrassed as I sat there at this table surrounded by all these people and read statements I had made the day after the accident that were completely the opposite of what I had just said there in the room moments ago. When asked which account was correct, I told them I had no idea.

Experience is definitely useful. In fact, that’s how we know most of what we know as individuals. However, there are definitely many doors for error even when knowledge comes from our own first-hand experience.

Another way of learning is through reason and logic. When we know one piece of information is true, we can use that information to deduce other information. Now, this is a very helpful way of learning. But, the big problem with this way of learning is that the original piece of information we deduced from may not be correct. So, if we say we know a piece of information is true because an authority told us or because we have heard it so many times and then, we deduce a conclusion from that information, our deduction will be incorrect if it turns out that the original piece of information was not correct.

I can give an example of this that I’ve seen happen in the medical community regarding blenderized diets. Abbott Nutrition and Nestle Health Science did some really poorly done research, which we will learn about later in another part of this series, that basically was used to tell dietitians and doctors that blenderized diets have really high levels of bacterial contamination.

Now, it’s important to know that those studies were done extremely poorly and their data did not at all support that conclusion. However, many people in the medical community, one, see these pharmaceutical companies as authority and believe what they say for that reason without doing any double checking. On top of that, Abbott Nutrition and Nestle Health Science know full well about the information I’m presenting here. They know if someone hears something often enough, they’ll believe it. So, they harp on this over and over again.

And so, through tenacity and authority, much of the medical community has come to wrongly believe that there is a lot of bacterial contamination in blended food. That piece of information that they have accepted as true is actually not true. But, let’s say they then take that information and because they believe it is true, they make a deduction from that. And one deduction they make is that because blended food has so much bacterial contamination in it, blended food cannot be safely fed through a J-tube because there isn’t as much protection in the intestines from pathogens as there is in the stomach with its higher acidity.

No study ever done has shown problems with feeding food into a J-tube. In fact, a couple studies have shown that feeding food into a J-tube is just fine most of the time as long as you’re taking the proper precautions. But, because they’re not looking at more solid evidence and instead, deducing from a false premise, they end up giving poor advice that turns out to be entirely incorrect.

And if you’re watching this and going into a panic saying, “Oh, you just can’t feed food through a J-tube. It just can’t be done. Please don’t tell people that.” I ask you to consider how you came to know that. Was it because someone in authority told you that? Was it because you have just heard it a bunch of times? Because I can tell you I know a lot of people at this point who have been successfully feeding blended food through a J-tube for years with absolutely no complications. And in fact, their children have less nutritional deficiencies when compared to their bloodwork when they were J-fed formula, their health is more stable and they’re really just doing great. And as I mentioned, the couple times has been studied, it actually showed that blended food could be fed through a J-tube and that’s perfectly safe as long as you take certain precautions.

So, you can see here that while logic and deduction are useful tools, this way of learning can go awry if you’re starting point that begins your chain of logic was not even correct to begin with.

So, with all of these ways of learning and coming to know and gaining information, it’s not that there are no places at all for these way, but you can see there are just many doors open for errors to be made. So, they are helpful and useful, but they should not be entirely depended upon because if they are, we can end up wrong about a lot of things no matter how educated we are.

The final way of learning that we’ll discuss here is through science. Science is a way of acquiring knowledge that directly addresses the biases that we bring with us when we come to a subject of interest and removes that bias so that we end up with, assuming we have a good study design, a data set that is not influenced by our biases or preconceived ideas from these other ways of learning that I just described. It uses objective measurements and the experiment itself can be repeated by others to see if they get the same results. And that’s done actually all the time. There are many things we can do to make sure our own bias or expectations don’t affect our data.

For example, I worked in research for several years and at one point, my job on a particular project was to observe interactions of family members with one another that had been recorded on video as they were performing a task they’d been asked to complete. I was then measuring certain aspects of those interactions.

I was not allowed to know anything about the hypothesis in the study because those that designed the study wanted to make sure that my expectation of finding a certain connection would not then bias me to score those measures in a certain way even if I did not mean to. So, to make sure my biases did not impact my scoring, I simply had no idea what the study was ultimately about while I observed the videos and scored them with the measures I was given.

So, that is one really lovely aspect of the scientific process because it removes all of these open doors to error.

The problem is when people take advantage of the scientific process and use very poor study designs that aren’t aimed to find the truth and instead, are just meant to get data that will benefit the researchers financially. When people do this, what they are doing is not even science. It is instead an abuse of the scientific process. And, sadly, that is actually running rampant right now in the field of nutrition where we have different companies making enteral formulas or different companies in the food industries making different foods, and they’re concocting all this terrible “research” and then they’re passing that along to people that are in a position to promote their products. And as they pass it along, they present their data as though it is from valid, properly designed studies when in fact, it’s not.

This is why we cannot just hear “Well, a study showed such and such is true” because there are a lot of crappy studies out there. We have to look up the study ourselves, read them with a critical eye and determine if their study design was solid and whether they analyzed their data properly.

And in that way, that is really what I consider to be the most beautiful aspect of science. It is there for everyone to check out. You don’t have to be a registered dietitian to read research studies about nutrition and determine if the studies are done correctly and then combine the knowledge you get from that review to come to a really firm conclusion that is very likely to be correct. You don’t have to be a doctor to review what science says about a medication. You can look all of this information up yourself.

Now, some people have commented that I can get a little worked up when someone says something like, “Well, you don’t have any place to comment on that because you don’t have the specific credentials in that area.” And I do get pretty worked up. Not because of anything they’re implying about me, but what they’re implying about all of us. What they’re saying is that none of us can learn for ourselves and we are just at the mercy of every authority out there and we just have to hope that they’re correct and don’t lead us astray.

But, that is a very wrong assertion. We are NOT at the mercy of authorities when it comes to gaining new knowledge. We absolutely can question what we are told and research it for ourselves. Science is not just for people with specific letters after their last name. Science is for absolutely everyone. And when someone suggests it isn’t, it really puts a dagger right into the most beautiful component of the scientific process. The field of science is there for all to benefit and learn from.

If you are not very experienced in the world of science and your skills are in different areas, this can sound very intimidating at first. But, honestly, the foundational principles of science are really quite simple to learn. So, in this series, we are just going to hit one or two chunks of this information at a time for you to take in and process little by little and by the end of this series, I am certain you are going to feel so empowered. You are going to feel so capable and so confident to get out there and learn all you can. So, don’t feel intimidated. I want this to be an empowering journey for you that leaves you with a skill set that will allow you to become really well informed on nearly any subject about this world on which you wish to be well informed.

By the way, please notice just under the video a little button. There are costs associated with keeping this website going and available to everyone, so I do ask if at any point, if you have gained important information that you feel is helpful to you, please consider making a small donation to contribute to this website. In the meantime, be on the look-out for the next video, which should be up in a couple weeks or so.