Henry's Homemade Formula

Our journey towards adding "real" foods into Henry's Homemade Blended G-Tube Formula

Feeding Tube Awareness Week 2018: Nutrition

Tuesday, February 6th: Nutrition: Fired Up About Nutrition


For Henry, his tube is his life…

For some people, they could survive without their feeding tube, but they would have chronic malnutrition. For Henry, he would die.

Henry is physically unable to consume the food and water he needs to survive.  He will not “just eat” if he’s hungry enough.  No, he isn’t being stubborn, picky, strong-willed, spoiled, lazy or any of the myriad of other comments we have been told over the years.   He is physically unable to eat and drink enough to survive.  So yes, he can drink some smoothie and eat some apple sauce, but no, he cannot eat the volume needed to live.

This is a very hard reality for many people to understand, especially given Henry’s condition is undiagnosed.  There’s no scientific name demonstrating his inability to eat.  But what we do have is almost 8 years of his life.  And in 8 years, he has never been able to swallow well enough to eat orally.  And we have numerous video fluoroscopies showing Henry’s swallow is delayed and too weak to successfully clear foods and liquids (a fluoroscopy is a video x-ray that shows real-time moving imagines, in this case as Henry chews and swallows food and liquids).



Today’s Topic is… There are long-term consequences to malnutrition and being undernourished. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.

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Eating ice cream (photos taken on the sly!)


We decided to have chocolate ice cream for afternoon snack this week.  I took a couple of photos – covertly so as to not mess with the ice cream karma!


While not such a flattering photos… it’s an excellent portrait of the ice cream mustache!



It was an interesting experience this time… he was very concerned about how much ice cream was on his spoon each time.  He kept saying “daddy help” – he wanted Shawn to scrap the ice cream off his spoon so he could try again.  I think the ice cream was harder than it had been, so he didn’t have as much control.  But what was interesting – he had a very specific amount that he was wanting to get on his spoon.  He couldn’t articulate it well, but over the course of a few minutes we could see what he was trying to accomplish.  He knew exactly how much he wanted in his mouth at one time.  Any more and he would scrap it all off and try again.

Just goes to show… he knows what he he needs and what he thinks he can handle.  Our job is to just support him as much as we can.

Cheers, Shelley

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My current dilemma… table manners vs. oral eating

This is what’s rooting around in the back of my mind right now… which is more important – table manners or encouraging oral eating?

For some people, both goals may be fine… but for us, they are currently mutually exclusive.  You see, Henry eats barely anything by mouth.  On a good day, he may take a couple of sips of water and place some puree or other food up to his lips to “taste” it.  Virtually nothing actually goes into his mouth, and if it does he drools it out immediately.  Drooling is an automatic reflex for him now – it ensures no food actually stays in his mouth, thereby protecting himself from choking.  And when needed, he produces a massive amount of saliva – food doesn’t stand a chance!

He has no psychological need to eat by mouth.  For as long as he remembers, he has eaten through his tube – that’s how it’s done. He copies Shawn & I and pretend eats, but thinks it’s a game, not for any substantial bodily need.   Working with Amina, our Occupational Therapist, we encourage Henry to explore foods with his hands, body, mouth, spoons, forks, cups, straws, toys… anything  he might feel comfortable with.  For us, food is for touching, rubbing on toys, “smooshing”, blowing bubbles in, tasting, licking… anything that keeps the experience positive.

His latest fun thing is helping Shawn and I eat.  When he’s done sitting in his chair, he sits on our lap and helps us eat by placing the food from our plates onto our fork.  This is one step up from his other favourite mealtime activity of placing food directly into our mouths with his hands.

All of this is in effort to encourage a positive experience with food.  We’ve had our share of ups and downs with this.  When we first introduced baby cereals when he was about 5 months old, he loved it!  Gobbled it up, if you can believe it.  We couldn’t have been happier.  After 5 months of unsuccessful breast, bottle and cup feeding, it seemed like we finally had a plausible alternative.  Unfortunately we didn’t know enough about what Henry could and couldn’t do… and after about 1 week he flatly refused all food.

Game Over… period.

We now know that the quiet coughing we heard was actually him continually choking on the food, unable to swallow strongly enough to get it down, and then breathing in the fluid that was left in his throat.  No wonder he stopped eating.  We’ve been on an eating roller coaster ever since… sometimes he will drink, sometimes he won’t.  Sometimes he’ll eat purees, sometimes he won’t.

At times he has refused all foods – for up to several weeks at a time.  Usually this is precipitated by his choking on something, but others times we don’t know of a definite cause.  I tend to go a little looney at these times… but it’s happened often enough now that I know he’ll eventually try foods again.   At times he will refuse to even sit in his chair – for a kid with low muscles tone he can sure arch his back in defiance!  These times he’ll join us at the table by sitting on our lap or standing beside our chair.

Family meal time is VERY important to us, so we eat together any way we can… even if that means we all have a picnic on the grass, or sit on the floor in the living room.  It doesn’t matter how we eat… as long as we’re together.

But this brings me back to my current dilemma… table manners vs. encouraging oral eating?

There are some things in life that I used to take for granted…

  1. no throwing food on the floor (once old enough to know better)
  2. no eating foods off other people’s plate
  3. other than the “at home 5 second rule”, no eating food off the floor
  4. toys are for playing, food is for eating

In the past 18 months, we’ve not only broken every rule… but often encouraged it!

So… here’s my rhetorical questions…

When Henry throws things on the floor – how do we respond? We don’t want him to throw his foods, spoons, etc on the floor.  We tell him not to.  Once he’s done in his chair we ask him to pick them up and give them to us.  But… do we do more?

  • When my nephew (now 3 1/2 years old) threw things on the floor, his parents would make him get out of his high chair and pick them up.  Then, since he was out of his chair, mealtime was over (much to his displeasure).  But my nephew is and always has been a great eater.  He wants in his chair; he wants to eat… so having mealtime end early was enough of a consequence to eventually break the throwing habit.
    • But Henry doesn’t want to eat.  He sees no need.  So taking him out of his chair early has no negative consequences.  We continue his “tube” meals even when he’s out of his chair… right now weight gain is more important.
    • We tried “time outs” when he threw – but he quickly formed a negative association with eating and started refusing to sit in his chair.  So time outs promptly ended, at least in this context.
    • He is slowly starting to throw less. Or we’re better ant noticing the signs and encouraging his to “pass it to mama” instead.  Either way… it’s improving :).

What about “helping” us eat off our plates, by placing foods either on our forks or in our mouths?

  • At home I don’t mind, so far.  It gets Henry involved at mealtime and touching the food.  He will sometimes lick his fingers afterwards, which means he getting some flavours.  Plus, he’s learning all the different foods – what the smell, feel and look like. All important things for us.
  • But I have to admit, we were out for dinner the other night at Whitespot.  We were outside on the balcony and there was only one other couple there, who were both happy smiling and waving to Henry.  They even suggested closing the patio door, so he could crawl around while we ate – very nice people.  But part way through the meal, Henry sat on Shawn’s lap and wanted to put food on his fork.  I felt uncomfortable.  Suddenly what I thought I was ok with… I wasn’t anymore.  There were different rules when out, and this was one of those times.  So Henry went back to crawling around and didn’t help Shawn eat.  Part of me is ok with this… but part of me wishes I’d been fine with letting him “help” Shawn eat, so that he could have experienced to restaurant meal too.

We were at a 1st birthday party for a friend of ours son a few weeks ago.  There were about 8 kids there of various ages, mostly cousins of the birthday boy.  One of the activities was cupcake decorating (great fun – wonderful idea for parties!) which Shawn & Henry did together.  Needless to say, right from the start they were both covered in icing… we thought it was great!  And Henry even started putting his fingers in his mouth and tasting the icing – we were thrilled!  He kept smearing it around on top of the cupcake and then licking his fingers.  Some parents might caution their child to not eat too much, but we were the opposite – go for it :).

  • A background… the other kids were the cleanest,quietest, calmest kids I have ever seen at a party.  No yelling, no grabbing dessert toppings… they didn’t even eat the cupcakes when they were finished decorating!  As a result, Henry stood out immediately.  And so did we for encouraging the mess.  Other parents kept offering us paper towel and water to clean up with.  We politely declined 🙂
  • We’re ok with getting completely covered with food. I have to keep reminding myself, its not “dirty” it’s food.  Food isn’t dirty – it might be messy, but not dirty.

At this same party, I was watching the mom feed her 1-year-old little boy. I have admit… I’m a bit of a voyeur.  Not in a lewd, peeping tom kind of way… more in a “curious, I missed out on it” way.  When ever I see kids eating – whether it be breast, bottle, cup or finger feeding, I find myself drawn in and watching.  I don’t mean to be rude – but I never got those experiences with Henry and I think this makes me curious.  Anyways, Mom was feeding her little one and he kept trying to touch her with the spoon.  It was all very cute, except mom’s reaction (to me anyways).  She kept saying, “Ew…yucky… don’t touch me with that…”.  And she meant it… she didn’t want his food anywhere on her.  I was horrified!  We would never say food is yucky.  And yet, for her… and he “good eater” son, this was normal.  I recall my sister-in-law did that for a time too.  I never thought anything of it, until now.  When you have a child who eats well, it probably doesn’t cross your mind.

Anyways, all this rambling somehow leads back to my initial dilemma… which is more important – table manners or encouraging oral eating.  I mentioned this to Shawn a few nights ago, and so far we both agree that we’re ok with the mess, the “help” and the occasional throwing.  We would much rather have an ill-mannered child who eats by mouth, than a perfectly mannered prince who is scared of food.

Cheers, Shelley


Feeding Study

Henry has a feeding study last week.  His last feeding study was about 1 year ago, when he was just over 8 weeks old.  This one was certainly a different experience!

To begin with, there was about 3 hours of consultation before the study, to see if Henry would drink enough liquid to get results.  Henry is taking water, but no much else, so we weren’t sure if we would get useful results.  But we decided to go ahead with it.

We arrived at the hospital at 7:45am and didn’t get home until after 4pm… whew… what a long day!  Henry showed his wonderful personality the whole time.  There was no way he was going to sit in that chair and drink yucky looking water!  Needless to say… it was a trying time for all of us.  He was screaming and yelling and breathing heavily – so not at all representative of at home.  But we did get him to drink a bit, so got some results:

  • no pooling (yeah!).  This means that when liquid is in his mouth, he swallows it.  He didn’t used to – the liquid would just sit in his mouth and he wouldn’t automatically swallow.  His swallow is still triggered farther back in his mouth than we would like, but it’s a definite improvement
  • no reside yeah!).  This means that when he does swallow, the muscles are strong enough to get all the liquid down
  • some penetration (boo!).  This means that some liquid was breathed into his airway.  NOT GOOD!.  But he was also yelling, screaming and hating the whole experience and I was pouring water into his mouth – so not a good study to accurately show a “typical” meal.  But it was the best we could do.
    • the good news is that he coughed it all out right away – which means his cough is definitely stronger than before.
    • and seeing as he doesn’t cough as home anymore when we drinks small amounts of water – we’re confident he’s ok with this (I know… there’s silent aspiration too… but he’s never had any lung infections, unexplained fevers, flu, etc – and the lung specialist says he sounds fine – so we’re ok with making this assumption as a family).

We couldn’t get Henry to drink any thicker liquids, so we still don’t know if his swallow is strong enough for something like pudding… but at least it’s a start!

Cheers, Shelley

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Some initial success & new-found help

I did some more research online a couple of day ago and found some great blogs from other mom’s. Full of useful tips about ingredients, timing, volumes, etc.

  1. http://www.samuelsformula.com/
  2. http://ainsleyrae.blogspot.com/2009/01/blenderized-diet-for-g-tube.html
  3. http://psychmamma.wordpress.com/2010/12/28/homemade-blenderized-formula-for-g-tube/#comment-3532
  4. http://prayingforparker.com/1707/blenderized-diets-for-g-tube-fed-kids-featuring-greensbury-market-oranic-beef/

We’re back on EBM now, mixed with 1.5 tsp of formula powder increased the calories. Henry tolerated it well for breakfast this morning. Will do 2-3 times per day, as our supply lasts.

Tried his homemade formula for lunch yesterday and he kept it down!

Did 4 cubes of homemade formula (120mls) mixed with 75mls of water. End result was about  150ml. And it was thin enough to go through the pump. While this isn’t that important, at lunch Henry usually falls asleep while having his milk and has a nap – so easier to use the pump than a syringe. Only gave him 100mls of the formula. He was asleep and not showing signs of distress, but I didn’t want to overfill his tummy given then new foods. I know it’s not sustainable longterm, but I figure it’s ok while starting. He ate again at 3pm snack time and that stayed down just fine with no signs of distress. So it think he digested it just fine! Going to try again tomorrow at lunch time, and try for a larger amount. Because I watered it down and didn’t do the full amount, I don’t know how many calories were in it, but I don’t mind. Henry’s doing well and one meal a day of experimenting is ok, in my books.

I read in one of the blogs that people digest heavier foods better at midday, which makes total sense… that’s when alot of people eat their largest meal. So better to give new foods then, versus for breakfast or evening snack.

New Supporter – his pediatrician

We had a GREAT appointment with our pediatrician two days ago. The man who has up until now has always said that weight is the end-all-be-all of determining health agreed that, although  Henry is not currently gaining much weight, he wasn’t eager to make any changes or do any further interventions. He actually suggested just waiting a bit  and seeing what happens – and we didn’t even have to suggest it first! Plus.. and even better… when I asked him about making Henry’s formula myself,  he thought it was a pretty logical idea and couldn’t see any reason not to try. Finally… someone who agrees!!!! Admittedly, he said he doesn’t know  too much about it, but said he’s do some research prior to our next appointment and see what he could find out to help. Yeah!!!!! I felt like hugging the  man. After being told no by the dietician every time I bring it up, it feels so good to have someone on my side.

Cheers,  Shelley

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