Camping and Blending.

We did it.  We went camping as a family of four.  Last summer it was out of the question because Beauty was on oxygen.  But this year, we were determined to go.
For our first time, we went somewhere not too far from home, so that if we forgot something, we could easily return to get it.  Definitely recommend staying close to home for the first time.

We brought our awesome blendtec blender.

A pan for washing dishes, tubes, syringes, etc.

Three coolers for foods/liquids.  (Our big has food allergies as well so it makes the adventure even more fun).

This cooler-specifically for medicine.

We made certain to take extra tubes and syringes.  We got a sight with electricity and water.  And we blended our morning feed at night time so as to not disturb the whole campground.
Our biggest fear was that our neighbors would be annoyed.  While the noise of the blender turned some heads, nobody seemed to care that much (Although one lady did come over to find out if we were making margaritas.  She was disappointed, and uncertain of how to respond when we told her what we were blending.)
So, our family of four successfully tent camped for three nights and four days with our blenderized diet tubie. What/where are some of the odd places you have blended?

Hospital Stays.

A few weeks back we had a scheduled, 48 hour E.E.G. for our beauty.  This wasn't our first stay with the blender in tow.  The first time I had to explain, and re-explain how I feed my child, until eventually everyone just told me to do what I do, and didn't ask anymore questions.
This time was pretty easy.  Nobody seemed as alarmed or surprised by the idea of it.  Nobody asked about calories.  The stay itself ended up being sort of hellish, and extended.  But that's not the point of this post.
You see, after they unhooked all of the leads from Beauty, and we got on the elevator to go downstairs, she began having a cluster of seizures.  We landed ourselves in the e.d., and she hadn't had anything to eat yet that morning.  After a few hours of being there, and waiting on a room, I asked the nurses if I could feed her.
With full support of everyone, I blended a meal for my daughter in the emergency department.
We ended up being re-admitted on a floor we haven't been on since Beauty was all formula fed.  The dietitian who saw us remembered us.  She could not believe the difference from then to now.  She told me she had to write something down for every child, but felt like I was doing a great job with her and didn't need exact details.  She was completely supportive.  She came back after doing some work nearly bursting because she had plotted the height and weight on a growth chart.  She was ecstatic to see how well she was growing, and went so far as to say she might encourage some other families to try this.
I've heard horror story after horror story about doctors being unsupportive.  We've had our share of hesitancy and misunderstanding with the medical community regarding the diet.  However, there are doctors, nurses, and dietitians who are willing to cheer you on.  You may have to look , or you may be lucky enough to stumble across them, but when you find them, they will be some of your biggest cheerleaders. There's nothing like balancing a horrible hospital stay with being told that something you are doing for your child is so amazing.

Comparing tubes and mouths.

I get wearied sometimes by the number of doctors who need to know.  I need to know how many calories she's taking in each day.  I need to know how much water, how much whole milk, what's her totals.  I roll my eyes and do my best to respond kindly so the doctors know that I'm competent, and that I'm not going to give in to their push.
The biggest frustration is that nobody asked me when my oldest daughter was eighteen months old what she hate, how many calories, how much milk, and how much water.  I was given some guidelines.  Some 'children of this age need this much milk' sort of suggestions.  But nobody was ready to freak out over my daughter's water intake.  Mostly, because if she chose not to drink, there wasn't a lot I could do to change that.
So, being the researcher that I am, I decided to compare what a day looks like in my Beauty's food and water intake, to that of a typical eighteen month old, who eats by mouth.

Beauty:
8 a.m. 4oz water.

8:30 a.m.  breakfast blend.  308 calories. 20ml (1/3 of an oz) water flush.

11:30 a.m. 2oz water.

12:00 p.m. 2oz whole milk, 1/4 cup roasted chicken, 1/3 cup broccolli, 1/3 cup raspberries, 1/2 slice g.f. bread. 206 calories. 20 ml water flush.

5:00 p.m. 2oz water.

5:30 p.m. 2oz whole milk, 1 tablespoon sunflower seed butter, 1/4 cup peas, 1/2 slice g.f. bread, 1/2 cup frozen peaches.  271 calories. 20 ml water flush.

8:30 p.m. 8oz whole milk. 150 calories.

10:00 p.m. 4oz. water.

calorie total=935  whole milk total=16oz  water total=13oz

18 month old who eats by mouth (I don't have times, but that doesn't matter so much).

1/2 peanut butter banana muffin. 113 calories.

8oz whole milk.  150 calories.

2oz. cheddar cheese. 228 calories.

1/2 chocolate graham cracker. 33 calories.

A few bites of grilled pork chop. Approximately 5 calories.

2 oven fries.  6 calories.

Low fat, mozzarella string cheese. 70 calories.

1/4 cup goldfish crackers.  200 calories.

8oz. 3/4 water and 1/4 juice mixture.  Drank around 1/3.  10 calories.

calorie total=815 calories.  whole milk=8oz. water=around 3oz.

The second child is growing, and has great parents.  It's okay that he didn't eat tons.  It's the plight of small children.  Some days they eat.  Some days they don't.  There's not a lot you can do about it.  However, my Beauty eats healthy, balanced meals everyday.  She has no choice in the matter.  So the next time a doctor decides to push me to count calories, I will kindly point them to this post, and tell them we are just fine, thank you very much.  Feel free to do the same.

Oops.

Saturday, for lunch, we were in a hurry to get everyone fed before we left for a wedding a couple hours away.  I put all of the ingredients for the blend in the blender, pushed the button, and walked away.  (Milk, rice cake, sunflower seed butter, bell pepper, and a plum.  In case you were wondering).
My husband took over when it was done, putting it into two bottles-one for lunch, and one to take to church for lunch on Sunday.  As he's scraping it out of the blender, he pulls something out, and asks, 'what did you put in there that had plastic on it?'
I was wracking my brain trying to figure it out.  The rice cakes come in a plastic bag, but I knew that wasn't it.  Nothing else had plastic.  After he finally dug all of it out, and pieced it together a bit, we were able to solve the mystery.  I decided to share it here, as a lesson in blending for everyone else.

ALWAYS, always, remove stickers from produce BEFORE blending.

Fillers.

I have written a post already about things that can add calories to a blend without adding much volume.  There are tons of options.  The list I posted is by no means extensive.  I'm certain there are tons of things I have missed on it.  We aren't really in need of extra calories anymore here.
I, however, am a medical nerd.  I read medical journals, drug trials, and nutrition information about my children's diagnoses.  If I meet another family, I research their child's diagnoses.  I just want to understand things.  In all honesty, it gives me some illusion of control, that I don't have at all.
In my research for the blenderized diet I came across an article written by doctors at the University of Cincinnati  and Cincinnati Children's Hospital.  They were specifically looking at the effects of the b.d. on children with a fundoplication.  After reading this though, I researched a little more for recipes for a blenderized diet.  I talked to a few other people.  I was sort of shocked by what I heard.
In order to increase calories people are being given recipes that add sugar, corn starch, or corn syrup.  I can't quite understand why there is need to add three tablespoons of sugar to a blend, aside from increasing calories.  There are so many other ways to increase calories, that are much healthier.
I have a desire to make tube feeding much less medical.  While a g-tube is a medical device, my daughter's eating is not a mathematical and medical formula that needs broken down and figured out.  Once again, I am aware that some children have things that require a very specific diet.  Lots of families though, are being told exactly what they can and can't feed their child, only because they have a g-tube.
If you would not use sugar, corn starch, or corn syrup to increase calories or fat in a typical child's diet (and I almost guarantee that a doctor would not tell you to use these to increase calories) then it is not necessary to use it for a b.d.  I want to empower you, if you are using a recipe with one of these things, to try something else.  Look around.  You CAN feed your child enough calories, with healthy foods.  You don't have to use fillers.  Remember, when someone feeds their typical child, they do not sit at each meal making it a stressful math equation.  They offer them balanced meals.  The child then chooses to only eat cheese for three days.  When you are feeding your tubie, you get to offer them a well balanced meal, and they will get all of it.  They get much less choice.  My seventeen month old eats much healthier than any of her peers.

Have you ever used these fillers?  Did they work well for you?

Help Wanted.

I'm still really excited about this blog.  I would LOVE to hear more about what people want to read about.  I also would be interested in other people who might want to tell their blenderized story.  I've been racking my brain for a topic for a few days now.  So comment or e-mail (imamann at gmail dot com) to throw out ideas, or let me know if you have a story to share.

The little Extras.

I don't know if everyone does this or not, but when I blend, my beauty gets the extras.  For example, the other night, we had chicken alfredo (the sauce i made has TONS of calories if you're in need of that), with a salad.  Beauty got the pasta, chicken, and alfredo sauce, spinach, carrots, celery, croutons, craisins, and then I put in some salad dressing.
This was definitely not a  meal where I was looking to give her any extra calories.  However, if she were eating by mouth, I would give her all of the veggies, and then put the dressing on the side for her to dip things in.  And, like most toddlers, she would likely devour it.  So she gets it in her blend.
If we eat pancakes, waffles, or french toast, she gets butter and syrup.  Biscuits get butter.  Tacos get sour cream, as does chili.  We also like our chili piled on top of corn chips.  Beauty's chili gets corn chips with it.  I try hard to give her what she would likely be getting, if she were to eat by mouth.  Even down to my oldest daughter, and husband's favorite banana chocolate chip muffins.
I have yet to blend anything like a cupcake or cookie to give to her.  If she isn't eating by her second birthday, we'll see what I decide to do for her party.
Overall, we eat really healthy.  Most of the extras she gets are good fats.  We want her tube to be her mouth, and so we do our best to give her the things she would be eating.

What are some extras you add to blends?

Protein.

Most people are aware that everyone needs protein.  But why do we need protein?  Where does it come from?
Protein makes up about 45% of the human body.  It is found in muscles, bones, hemoglobin, myoglobin, hormones, antibodies, and enzymes.  Protein is necessary for building and repairing tissue, it produces enzymes and hormones,  it regulates water balancing, transports nutrients, and helps muscles contract.  Protein helps us resist diseases, and gives us energy and stamina.
I imagine that when the word protein is mentioned, almost everyone pictures some sort of meat.  Meat definitely fits into that category.  There are also lots of other sources of protein available, that may be less expensive, or carry some different vitamins and minerals than what are commonly found in meat.
If you are looking to think outside of the box, here is a list of things that you can add to the blender to help meet the dietary need for protein.

Milk Products:  Cheese (some are better than other-with the highest being Parmesan  and Yogurt both are high sources, but really milk, and all products produced from milk, contain protein.

Legumes:  Nuts, Beans, Seeds (sunflower, pumpkin, flax, chia, etc.), Peas, Lentils.

Vegetable:  Corn, Tomatoes, Soy, Brussel Sprouts, Spinach, Broccoli, Asparagus, Greens, Kale, Cauliflower, Cucumbers, Cabbage, Parsley, Mushrooms, Green Peppers, Avocado.

Fruit: Dried Fruits (dried apricots, raisins, prunes, dried figs), Passion Fruit, Kumquat, Mulberries, Currants (black and red), Blackberries.

Grains:  Oats, Wheat Flour, Whole wheat pasta, Egg noodles, Buckwheat, Millet, Rice, Quinoa, Barley, Rye, Bulgar, Spelt.

The biggest thing with proteins is that they all contain amino acids.  You need sources that have all of the different amino acids. There are some foods though, that are 'complete proteins' so they contain all of the amino acids you need.  All animal products (meat, eggs, fish, milk) are complete proteins.  Quinoa is as well (and as I mentioned before, one of my favorite foods because of how rich it is in so many areas).
As long as you are getting a wide variety of protein sources, you will get all of the amino acids you need.  Some of the complete combinations are things you likely eat together anyway (or at least we do), beans and rice (ours always had tomatoes and corn as well...lots of protein), hummus and pita bread, and the list goes on.
If you are overly worried about protein, you probably don't need to by.  Pretty much every resource out there says most Americans are getting enough protein   Even those who are vegetarian or vegan.  The greater issue is too much protein in our diets.

What are some of your favorite non-meat sources of protein?

P is for....

If you have been a parent at all, you likely have realized that the topic of pooping comes up regularly all of a sudden.  For some reason, this is even more true for children with tubes.  For our family, it is because low muscle tone means slower moving food, means higher incidents of constipation.  Some families are dealing with slow motility, and a myriad of other things that can affect a child's bowel habits.
We weren't interested in the normal regimen of miralax.  I felt like it was offered the moment she set foot in the clinic for Down syndrome, because it was assumed she would have trouble.  While we aren't opposed to medicine at our house, and believe there are instances where it is necessary  we like to try for natural before we jump into a prescription.  And, there are lots of things that can be given in a blenderized diet to help with constipation.
First of all, a great helper is P fruits.  Think of fruits that start with P's, and go with them.  Plums, peaches, pears, and pineapple are all great.  We really love prunes in our blends as well.  Some other fruits that work well for us are grapes, raisins, avocado  and apricots have also worked well for us.  Most fruits contain natural fiber, and therefore are helpful in easing constipation.  Green veggies are also helpful.  We use apples and bananas sparingly because we have found them to cause more issues with constipation.
Grains are also a great helper to keep things moving.  Whole grains of any sort tend to help.  We are personally big fans of flax seed (you can buy flax meal, or grind the seeds into meal before adding to a blend), quinoa, and buckwheat (breads made with buckwheat, or cream of buckwheat both work for us).  We are a gluten free family, so I don't have experience with this, but I also have heart that oats are helpful as well.
Making certain that a lot of water is being added is important as well.  We do a water bolus before a meal, a flush after meals, and large bolus first thing in the morning, and at bedtime.  Water should not affect the amounts that can be given at meal times.  Water is absorbed instead of digested.  It takes the body between 10-30 minutes to absorb water.  So if you are still nervous about the water affecting how much you might be able to feed, make certain it is given at least thirty minutes before mealtime.  We have found, though, that the closer to mealtimes it is, the more it help prevent constipation.
Some people add oils to the blend, or give them directly through a g-tube as well.  We have done this in the past, and I'm not opposed to it.  It did not make a huge difference for us.  So you may have to play around with things to see what works best.  Also, things that are warm digest better.  So if you are giving free fluids of any sort, warm them up a bit, make certain the blends are warmed as well.
And lastly, my personal favorites, breast milk (if you have any available to you) keeps things regular for our Beauty all the time.  When we don't have any available to us, coconut water for the win.  If you have ever seen the movie 'Cast Away' you may remember Tom Hanks making a reference to the coconuts being a laxative.  While it doesn't quite have that extreme of an affect here, We do like to give her a couple of ounces each day, warmed up a bit, and it keeps things moving quickly.  You can get different flavors, brands, so on and so forth.  We don't have any particular favorites.  My only requirement, is that, when reading the label, it not have added sugar of any sort.  There are a few we like that have fruit purees in with them.  One brand has one that is coconut water with coconut and pineapple puree.  If there's anything not moving through, this particular one will clear things out in no time.

What about you?  Do you have anything you have found, when added to blends, helps keep bowels moving well?

Feeding time.

Sorry for my few days of absence   We had some three letter testing for both girls over the last weeks, results that have meant getting used to new meds, and then all the girls of the house got sick.

One of the things that was important to us when we chose to switch our beauty to blenderized is having her be part of family meal times.  Before this, she ate every so many hours, and it rarely lined up with when we were eating.  This was especially true due to the large amount of stopping feeds because of vomiting.
When we switched her over, we wanted her to eat with us.  So we made it a priority.  Now it just seems like a natural part of our lives.
We blend whatever we are eating, sit down as a family, and Beauty gets fed through her tube and sits at the table with us.  This has also led to her being much more interested in trying what we are eating (she can do so safely.  I know that isn't an option for everyone).  She associates her belly being filled with sitting at the table as a family, laughing, talking, and enjoying our time together.
Doing this has also meant, for us, that her feeding feels less like a medical process.  We have wanted to make her tube a normal part of our lives, and we want it to be seen as eating, just with her mouth being in a different spot.  By having her at the table, eating what we are, while we are, we have accomplished this feeling for our family.

When do you do feeds?  What are some things that are special about them for you?

Lessons in blending.

Learning what to blend, how to blend, and how to feed my Beauty was a process.  And, like most processes, there were some epic failures.  I think we would finally say we've got this now.  However, our textured ceiling in our dining room will forever hold the marks of our mistakes, as do some of our walls, and an original painting.

Lesson one:  Things that don't get blended all the way.

First of all, almost any food will blend well, if there is enough liquid in the blend.  I can tell within ten seconds if I need to add more at this point.  If there are still quite a few pieces of food, or chunks that aren't blended, you more than likely need more liquid.  I can usually just add about an ounce of water, scrape everything back together, and blend it a second time.
Blackberries are my arch nemesis.  Occasionally they will do great, but most of the time, those seeds get stuck in the tube when I'm pushing the blend, and I have to unclog it over and over while I'm feeding her.  We usually just stay away from them.  We don't have problems with kiwi, or raspberries, but for whatever reason, blackberry seeds make us more work than is worth it.
Cooked grains are another point of contention.  We have found that if we have a meal with rice, or regular quinoa (as opposed to the flakes, that are more like oatmeal), and sometimes even pasta (we use gluten free-so it is made from brown rice) the items need to be overcooked in order to blend well.  Anything less, and you will be stuck with little hard bits of grain stuck in the end of the tube.  It works out fine for us because the husband and oldest daughter prefer soggy grains, and I'm indifferent really.  If you are an al dente type of family, you may need to cook grains seperately, or cook the portion being blended longer.

Lesson two:  Syringes that suck....er don't suck.

We get catheter tip syringes through our medical supply company.  Our insurance pays for us to get one a day.  In theory, the syringes should be able to be used multiple times.  However, we have found that one or two times is about all we get out of these.  We have tried many different things to make them last longer.  What ends up happening for us, is they are impossible to suck food up into, or, once it's in there, and you are  attempting to get the air out, it won't push out.  When it finally gives, it's with incredible force, shooting food in whatever direction the tip is pointed.  The other issues we have with them is that the large black rubber piece that's supposed to help the plunger part glide back and forth easily, will come off while sucking food up.  Then you end up with a mess trying to get all of the food back out of the syringe so it isn't wasted, and starting with a new syringe.
Even when these syringes are 'working' after the first time, it takes my small framed self quite a bit of physical exertion to feed my child.  That seems a little silly, and more than what most people really want to deal with in the wake of taking on a new type of feeding.
We have found a better syringe.  They have what's referred to as an o-ring, instead of the large rubber piece, for the plunger.  These can be used multiple times, are easy both to suck food up, and push it through the tube, and have never shot food all over our house.  The only downside, we have to purchase them ourselves.  We think it's well worth the money to have them on hand.  We also haven't had any of them go bad yet.

Lesson three:  There are different types of extension tubes.

It's very possible every other person dealing with a g-tube knows and understands this.  I did not.  Our Beauty is on quite a few meds.  When she got her first tube, it was a low-profile peg tube.  Unlike the Mic-Key or the Mini-One, the extension tubes did not lock in.  I hated it for this reason.  It came with three types of tubes.  One had a med-port and a right angle where it connected to the g-tube, one was a right angle decompression tube, and the third one was a short tube that went straight in.  I thought the third tube was mostly just annoying.  We opted to use the tubes with med-ports because she was getting meds at every feed during that time period.
Fast forward to our change over to blenderized diet.  At this point we had switched to a Mini-one, non-balloon.  So we only had two types of tubes, and the only kind we ever got were the ones with the med-port.  I had no idea what the other tubes were for, other than to make it really hard to give my child her meds.
Turns out, if you are pushing a feed through, and you have to use force for any reason, the med ports give before the food will go through.  So once again, I have food shooting out, and onto some surface nearby.  I learned, as a result, that the straight tubes are called 'bolus tubes.'  They are meant to do bolus (or fast and all at once) feeds, and work about 1000% better for a blended feed in our house.  The meds took some time getting used to still, but we have figured out how to push the med, and clamp the tube quickly so that it doesn't come back out at us.  And we have transferred the majority of her meds to being during her night time bolus of milk, and then water a few hours later-because we use a med-port tube for these feeds.

Lesson four:  Getting unstuck.

No matter how great the blend is, the tube is, and the syringe is, you will more than likely still deal with a clog in the tube at some point.  I have made lots of mistakes with these.  I ended up with blended food in my eyes one time as a result, and consequently had to crawl to the kitchen and flush my eyes in order to reconvene my day.
My suggestion, if you are pushing, and the syringe won't go any more, pull back a little.  IF food comes back some, you can try pushing again.  I usually do this a couple of times.  If that doesn't work, unhook the extension from the g-tube, get a clean syringe, and flush with water, in the sink, pushing and pulling until it flows freely again.  Then you can restart your feeding.  If the syringe still doesn't work, you can try a toothpick in the end to get whatever is stuck, unstuck, or you can let the tube soak in some hot water and pull out a clean extension to finish the feed.  We have never had to throw a tube away from a clog, but there have definitely been words uttered under my breath from them.

Do you have any lessons you have learned that might help others?

Our morning blend.

While most of our meals are varied, breakfast at our house is the same almost every day.  For everyone.  It helps me get through the mornings since I am often foggy and tired.  However, our breakfast always seems to be a great start for our beauty, full of protein, as well as things that help keep her gut healthy and moving.
In the blend every morning:
We get donated breast milk that we use most of the time.  If we are out we use whole milk.  For the sake of  calories, and helping you count, I will go with the whole milk.  If you are interested in knowing numbers for breast milk, I would be more than happy to share what I have learned.

2 oz.milk-37 calories
2oz. plain, whole milk yogurt-40 calories
1/3dry quinoa flakes mixed with hot water-131 calories
1 serving of prunes-100 calories

I put the liquid in first (milk) as well as yogurt, followed by quinoa, and then the prunes.  I hit the soup button on my blendtec, and ninety seconds later, everything is pureed, and warmed (an awesome bonus to the soup option on my blender).  Our beauty gets around six ounces of breakfast from this mix, and is now set to make it a few hours with 308 calories from her mix, a great dose of protein from the quinoa, good bacteria from the yogurt, and a great source of fiber to keep things moving from the prunes.  There are things that could be added to this to very easily up the calories (a tablespoon of coconut oil would take you up to 428 calories).
What do you blend for breakfast?  Are you more adventurous than me?

Blending and Big Siblings.

I know that often, one of the big worries for families of children with special needs, is how an older sibling might feel.  I never want our Beauty's older sister to feel left out, or different.  For a while, our big insisted that she had Down syndrome (even though she actually has a genetic disorder, a second disorder, asthma, and food allergies, all her own), and that she had a g-tube when she was a baby too.  There is a picture of her with an ng tube from the couple of days she spent in the NICU after birth, but she has always eaten by mouth.
So to try to help her out, I did surgery on a baby doll so that she also could feed her baby through her tube.  It worked like a charm.  She loves taking care of her baby, has named her after her sister, and often takes her with us when we go places, or feed her during our meal time.  What could easily be a point of contention with feeling like a sibling is getting something she isn't, or feeling uneasy or scared about her sister's g-tube, has been transformed into something she understands, helps with what she can, and is able to do for her baby as well.

'It's going to be loud.'

                                     

Getting the food into the syringe.

Getting the extra air out.

Hooking baby up to her tube.

Getting ready to feed her.  The actual feeding happened so fast I didn't get it on camera.

Taking her extension tube out.

Picking up baby after she is all done.

Our big now just sees the feeding process as a normal part of our day.  She often wants to know what's in the blend that her sister is getting (lest her sister gets something that she doesn't).  But the feeds are something she sees as completely normal.  There is no fear, no jealousy, and she loves getting to be part of it in some way.

Eating on the go.

Obviously, blending meals while at home is easy and straight forward.  But how do you continue the diet on a day full of appointments, or when traveling?
For us, if we have upcoming appointments, I make extra of whatever meal(s) we will need the day before, and take it with us.  I put the food in a baby bottle with a flat lid (not a nipple) like parents use for expressed breast milk.  I then pack a syringe or two, and a bolus tube to do the feeding.  I carry it in a cooler with an ice pack.
The food ALWAYS works better for us if it's warmed.  So if I have appointments, the hospital cafeteria has a microwave available, and I warm it there.  If we are at a restaurant, or on the road, we ask for a cup of hot water to set the bottle in to warm it up.   We've never had any issues with getting a restaurant to comply, or anyone saying anything about us feeding her food we brought in.
If we are traveling and going to be gone for multiple days, we make certain wherever we are staying has a fridge.  I'm not above telling a hotel that our daughter has special needs, and has medicine and foods that have to be refrigerated   Our experience has been that often the higher charge that is paid for rooms with a fridge and microwave are waved or reduced.  We also take the blender with us.  We have even taken the blender to the hospital with us, and fed her the same as I would at home.
I also know of a family who took their blender on an airplane as a carry on.  If you are planning on flying, I would just call ahead and talk to the airline.  Even though it might feel like more work, making certain the item you have to have to feed your kid is with you at all moments, is pretty important.
Our blender has made many trips to visit family, friends, and any other time we are gone overnight.  The hardest part about traveling with it, for us, is that if you are in a hotel, washing it out in a small sink or bathtub is not that fun.

Things the professionals say.

It seems so simple to me, that doctors, nutritionist, and any other professional working with your child would be all for a parent feeding their child real food.  But this isn't always the case.  Perhaps the formula industry has done a really good job of making everyone believe that their formula really is the perfect food.  Maybe professionals are just that far removed from being able to remember that a person with a g-tube is a person, and not a patient, and that food is what is needed, not a formula used like medicine.
We were getting our formula covered through beauty's insurance.  A can, that cost around 15 dollars at any big box store, was around 90 for the insurance company to pay for.  We got around 1200 dollars worth of formula every month.  Even if that money isn't coming straight out of my pocket, that is completely unacceptable.  I spend 1/4 of that on our grocery budget, a month, for four people.

Here's what happened for us though, when we switched.  Our beauty has some amazing doctors.  We also have a few that aren't that great.  Such is the way with medicine.  The two that mattered the most (our Primary and our Developmental Pediatrician) were completely on board the moment they saw the changes in her.
The others, well, I have heard it all now.  'It will hurt her tube.'  'Do you have anyone helping you with that?'  'It increases the risk of infection.'  'You have to be careful of her sodium intake.'  'It's so much more work.' 'Formula has all the nutrients she might need.'  'She still needs milk.'  'How many calories is she getting each day?'  'What is the base for your formula you are making?'

First, and foremost, formula is chemically processed food.  Most are made up of a whole list of things I can't pronounce and don't understand what they are.  When my four year old began eating solids, nobody questioned how many calories she was getting.  When we switched her to whole milk and table food at a year, nobody asked questions.  No one argued that I should put her on formula because it's nutritionally complete.  Nobody questioned her sodium intake (and if you have ever looked at the name brand 'toddler foods' that are prepackaged, they contain more than 100% of the rda of sodium for a toddler.  Maybe doctors should be asking about it).  I fed her whatever I wanted.  And while our family eats healthy, and a wide variety of fruits and vegetables, there are families feeding their toddlers soda and chips.
As far as infection goes, what?  I don't know how others feed, but pushing food in during mealtime, and then flushing the tube, there really is no higher risk than having her hooked to a feeding pump with milk in it for hours at a time.  Matter of fact, the risk seems lower to me since milk starts to go bad at some point.
I don't need help feeding my family nutritious meals.  Beauty eats better than my oldest daughter did, because she can't refuse anything.  She gets more fluids in her, because she has no choice.  She 'eats' things like raw spinach, salad, tuna, hummus, quinoa, flax seed, and the list goes on and on.  While my oldest was not a picky eater, just like every toddler, she had meals she ate so little I wondered if she would be sustained.  She got sick and refused to eat for a few days.  She got busy, and no matter how often I offered her water, she didn't want it.  This adds up to the fact that my sixteen month old, eats better than probably every other sixteen month old out there who eats by mouth.  When she's sick, she still gets healthy food, and I can give her extra fluids.
More work?  HA!  Perhaps there are families who feel this way.  And that's fine, they do what works for them.  But apparently the doctors missed the part where I was cleaning up puke multiple times a day.  Putting things in a blender three times a day, blending it, and feeding it to my kid, adds around ten minutes to each meal time.  That's less time than she spent hooked to a feeding pump before.  I'll take my 'more work' any day over what we had going on before.
We don't have a base.  Some families do.  Once again, I don't have a 'base' for my oldest daughter, and I don't need one for my youngest.
I know there are families that have a much different experience with tube feeding.  One of my friends has a daughter who is on a diet for renal failure.  Blending for her is much different that it is for me.  Kids with severe allergies, metabolic disorders, and a whole list of other issues have to have specialized diets.  They might be families who do need more help from someone on what should and should not go in their blends.
However, lots of kids with g-tubes have them simply because they cannot safely eat by mouth.  Therefore, their tube, is just their mouth, in a different location.  There is really no need to make feeding them any more complicated.
Doctors, nutritionist, and other professionals, please stop heaping on more work and anxiety for parents.  Most of us who have children with g-tubes already have more than the typical parent does for day in and day out.  Don't add to that.  Be supportive.  Be encouraging.  Be willing to learn, but don't assume, we as parents, are incapable of figuring out how to feed our children.

More calories, less volume.

Everywhere around me I see things advertising less calories in food items.  Who knew that some day I would have children that made me work hard to get every calorie possible in them.  (My oldest daughter has had trouble with growing since around her first birthday).  I have learned how to boost calories, without filling her full of empty calories.
Empty calories=food/drinks that make you feel full, but offer little nutritional value in the way of vitamins and minerals your body needs.  Juice, sugar, lots of fast food, soda, and the list goes on.  All of these things make you feel full at the moment, but not full of the things that you need.
I now have a list of things that are full of calories and healthy fats.  The challenge that the blenderized diet adds, is that lots of people need to boost calories without adding much volume.
So I'll make a list, and if you want to add to it, feel free to comment, sharing things you use.

*Dried fruit-grapes, prunes, craisins, blueberries, and so on. 1/4c. is around 100 calories (and our blender pulverizes them, no problem).  They are also great for constipation.
*Oils/butter-you can cook with them (I use olive, coconut, or real butter, not margarine).  You can also add them straight to the blender if your child tolerates.  1 tablespoon of coconut oil or olive oil has 120 calories in it. 1 tablespoon of butter has 102 calories.
* Avocado (or avocado oil).  1/4c puree is around 100 calories.  The oil is the same as olive and coconut-1 tbsp is 120 calories.
*Nut butters.  1 tbsp sunflower seed butter-96 calories.  1 tbsp (Jif creamy) peanut butter is 95 calories. 1 tbsp cashew butter is 94 calories.  1 tablespoon almond butter is 101 calories.
*Heavy whipping cream.  1 tablespoon heavy whipping cream is 52 calories.
*Chicken broth. While it isn't loaded with calories, if you use it in place of water for blending, it does add a few.  Most brands, 1 cup is around 10 calories.
*Quinoa. (I could do a whole post on how amazing this stuff is).  Uncooked, 1/4 c is around 157 calories.  If you cook it in something like chicken broth, and add some butter or oil to it, you are packing in calories like almost no other food can give.  It's also very good for you, and a complete source of protein.
*Cheese.  The numbers vary depending on the type of cheese you choose.  However, 1 oz. of colby jack is 110 calories.
*Maple syrup.  1 tablespoon is 52 calories.  It also contains iron, calcium, and can help with constipation!

Please, help me add to this list, if you know of more things.  We don't have to add calories at this point because our beauty is growing really well.  But there are lots of families looking for ways to boost their blends without adding any volume.

This is how we do it.

Our journey into the world of a blenderized diet began well before we actually started the diet.  We've only been doing the diet for around four months.  I know, that doesn't sound like long.  In all honesty, it feels like this is all we have ever done.  I started off nervous, counting every calorie, measuring everything that went in the blender.
Two weeks into it, every day was coming up with more calories than the formula had ever gotten in her, even when she was on 32 k/cal formula.  Every day was coming up with no puking, meaning the calories we were getting in, were staying in.  And everyday, I felt like a much better parent, getting all of the food groups in my child, in a healthy, well balanced meal.
I'm not so fumbly anymore.  I feel like I have it under control most days.  While beauty does eat the same thing (with a small amount of variation) for breakfast every morning, so does my four year old.  The rest of her meals are exactly what we eat most days.  She also gets free water and milk outside of her meals.  Her calorie intake is somewhere around 1000 calories each day.
Just to give you reference, she is sixteen months, weighs seventeen pounds, and is about 28-1/2 inches long.  She is in the 50% percentile for both height and weight on the Down syndrome chart.  While that all sounds good, she started out at 4 lbs 15 oz, and by one month, had dropped to 4lbs 4oz as a result of hypothyroidism that was missed on her newborn screen.  She was not on the charts at all until we started this diet.  Not even the Down syndrome chart.

And this, is how we do it, each and every day. (Our oldest daughter is allergic to nuts, and cannot have gluten or soy.  So our meals reflect that.)

Breakfast
4-oz water.
~6 oz of breakfast-2oz whole milk, 2oz whole milk yogurt, either quinoa flakes (cooked like oatmeal), or cream of buckwheat, and 5ish prunes.
~20ml water flush (30ml=1oz).

Lunch
2-oz water.
~6oz of lunch-2oz whole milk, a protien, a grain, a vegetable, and a fruit.  so an example might be: hummus and crackers, carrot sticks and dip, and peaches.  Why the dip?  Because she would eat it if she ate by mouth and it's extra calories.
~20ml water flush.

Dinner
2-oz water.
~6 oz of dinner-(same as above for food groups).  an example: 2oz. whole milk, pasta with tomato sauce, broccoli cooked in olive oil or butter, and blueberries.
~20ml water flush.

Bedtime
8 oz. whole milk as she falls asleep (we use the feed pump for this).

Our bedtime
Somewhere between 10 and 10:30 she gets 4-oz of water with her last meds of the day.

We are not vegetarians.  We also do not eat meat everyday.  There is protein in every meal on here, just not from a meat source.