Henry's Homemade Formula

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

Feeding Tube Awareness Week 2018: Celebrate

Friday, February 9th: Educate and Celebrate

For the last day of Feeding Tube Awareness Week, here’s a little photo walk through the past 8 years…




Cheers, Shelley

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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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A few years later…



And now…





As they say – time flies when you’re having fun!  It also flies when you’re crying, laughing, shaking your head in disbelief and when you’re sleeping :).

It’s been almost 4 years since my last post and as expected so many things have happened.

I stopped posting regularly back in 2014 for a number of reasons, but mostly because I simply didn’t feel the desire.  I started this blog because I felt I had something valuable to share.  Our journey learning how to feed Henry healthy, well balanced, homemade blended meals was something new to us – and to many of the people we turned to for support.  As I was asking for help, I kept meeting people who not only didn’t have any help to give, but were eager to learn along with me.  Thus… the blog was born.

However after a couple years, my desire to document our lives lessened.  I felt I didn’t have as much new information to share and I felt I just wanted to focus on Henry being a kid for a while.  To stop highlighting how he was different, and to just enjoy being a family.

Henry is now 7 years old, is attending grade 2 at our local community school for the first time, and is a typical kid in many ways.  He is still stubborn (like his Mama), loves music, trains, and all things computers/technology/etc (like his Dad), and is a typical cheeky 7 year old.

He continues to eat exclusively through his g-tube (he still has a Nutriport brand low-profile device) and tastes food when he wants to (vanilla ice cream, whip cream and smoothies are current favourites).  He wears SMO orthotics for foot and ankle support but other than that, he is medically well.  He seems to have outgrown most of his asthma challenges and hasn’t used any type of inhaler for well over a year.  When he gets sick, it still takes him longer than typical to recover, but his overall sick days are done drastically from earlier years and we haven’t needed a trip to the ER for breathing difficulties in a long time.

Henry is still small for his age, and likely always will be.  At 34 pounds, I joke he’ll be off to college still riding in his car seat.  But his height is good and nothing we seem to do makes a different to his weight so I try not to worry about it.  His pediatrician isn’t panicked yet, so why should I.

We still make his “blender food” ourselves – and have found a comfortable rhythm that works for us.  Every so often we think… “gee it would be nice to use a commercial food formula” (like that day at Science World when I forgot his food at home!), but Henry’s allergies to wheat, corn and dairy make that impossible.

Overall, he is a happy, healthy boy (who happens to have been born with a muscle condition). We are a fairly typical family of four, with reasons to celebrate and reasons to cry… just like most families we know!

Cheers, Shelley

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Back to the hospital… and a new asthma medication

We were curious how far into the fall season we would make it before our first cold… well, now we know!  It’s not surprising, of course.  Between preschool, playgroup, motoring munchkins and music group… we’ve been fulling enjoying being 31/2 years old :).


So, we spent the day in the ER.  Boy is it busy on a Saturday afternoon!  After waiting about an hour for a room (and we were triaged first priority) we started the asthma protocol.  Henry’s wasn’t doing that bad this time as he’s already had 9 puffs of Ventolin at home, and we took him at the first sign of difficult breathing.  He had one dose of Dexamethasone and then we waited to see if that was enough.  The ER doctor was hoping we wouldn’t need more Ventolin and Atrovent, but in the end we did.  But only one round each (5 puffs Ventolin and 3 puffs Atrovent) and then he was stable enough to come home.


We are also starting a new medication – Advair – which replaces his Flovent.  From my understanding Advair is one step “up” from Flovent because it is a little stronger and contains two active ingredients: salmeterol and fluticasone.  These work to keep the air passages of the lungs open by relaxing the muscles and by reducing inflammation, swelling and irritation.  It is steroid medication, which makes me a bit nervous… but it seems to the best option to control Henry’s breathing.   Advair is a long term medication designed to help prevent asthma symptoms; it is not a rescue medication for it he is already having symptoms.  Dr Seear, our Respirologist, recommended trying Advair as Henry has been repeatedly admitted due to his asthma.

This year we are also going to try taking the Advair on a more regular basis.  While last year we only started the Ventolin once Henry was already having trouble breathing, this year we are going to use the Advair continuously over the winter.  We have two choices, and haven’t decided which one we’ll try first.  Either he takes one puff daily all winter.  Or he takes two puffs daily at the first sign of a cold.  We were leaning towards the second option as we thought it would involve less medication overall… but if he is continually sick it may not work out that way.  So we’ll see how it goes.

In the end… we know he’s going to get sick and we’re going to keep having fun anyways! We don’t believe in living in a bubble… so if the consequences of having fun are colds and a few trips to the doctor – then so be it :).


Cheers, Shelley



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And the good stuff continues!

Today at breakfast Henry drank almost a full Ikea plastic glass of orange juice… that’s gotta be about 5 ounces!!!  Shawn filled up his cup 3 times… partially full each time, as finishing smaller amounts gives a feeling of success. Much more exciting to refill a glass THREE TIMES than to leave a full glass partially unfinished 🙂

Then this afternoon they made hummus and Henry ate three spoon fulls… Shawn figures one was almost 1/2 tablespoon full!  Swallowed… no problem… no concern… still chatting and smiling afterwards…



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OMG… He bit off some bread, chewed and swallowed it!

This is amazing… like I’m giddy amazing… like Shawn & I were both dumbfounded amazing… 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂

I know, there’s someone out there reading this who is wondering what the big deal is… but for everyone else…


Yesterday Henry bit off a piece of hotdog bun – about the size of a crouton – chewed it, and swallowed it!!


Before I go any farther… for our close friends and family – those people who will have the opportunity to see Henry… please read to the very end. 

There has been a lot of lead up to this… not just general progress over the past 3.5 years, but specifically in the past few months.

  • First he learned how to drink through a straw, which told us he could swallow larger volumes of liquid.
  • Then he “decided” he wanted to eat only through his mouth.  A great sentiment, but also a struggle as he didn’t want to eat through his tube.
  • Then he started talking more about foods that “melt in my mouth”, and began asking if the foods on his plate would melt.  Shawn or I would take a very small bite of said food and count how many times we chewed it before it would “melt” enough to swallow.
  • Over the past month he has been tasting, licking, biting and exploring lots of different foods.  He has done this consistently for quite some time, but this time it was different.  Typically he would try something for a day or so, and then stop and not try anything for a few weeks.  This time, he has been continuing for a longer period of time.
  • And like most kids… he discovered ketchup!  And began dipping anything and everything he could find in it, just to lick the ketchup off :).


And then it happened.  We were having hotdogs last night.  He asked if the bun would melt in his mouth. Shawn took a bite and said it was about 10 chews for it to melt.  So Henry took a bite – and teeny, weeny bite… and we counted together.


Then with some coaching he used his tongue to move the bread around and chewed again


And then it was gone…. 🙂

“It’s in my tummy” he exclaimed!!!!!!

“And… how did it feel?”

“it felt good!… I’m going to do it again!”


And the process was repeated with a slightly larger piece…

Once again he bit, chewed, moved it with his tongue, chewed more and it was swallowed!


And then he did it again… but this time he took a MUCH LARGER BITE.

I have to admit, I was worried.  I didn’t think he could swallow it.  I didn’t want this experience to end with coughing or panic.  I wanted it to end on a happy note.  So we counted and chewed… moved it around… counted and chewed some more… moved it around.  I think he chewed it about 60 times.  His chew is quite ineffective, so it took a lot to get it to “melt”.  You could see the saliva just about ready to drip from his lips.  This was pushing his comfort level.  But he was smiling – there were no signs of panic.  And then we say it… a swallow.

Suddenly he opened his mouth and it was gone.  SWALLOWED!

“And… how did it feel?” I asked anxiously…

“it felt good!”



And now I have a request… for those people who know us well and will see Henry… please say nothing.  That’s right…. absolutely nothing!  It’s not that I’m trying to be rude, but we have found in the past that when people comment on what Henry has eaten… he stops completely.  I know that comments are meant to be encouraging, supportive, and friendly… but Henry appears to feel pressured by them and backs off completely.  So please… don’t even bring it up when he is around… not with him or with us.  We know that you are as thrilled as we are… 🙂


Cheers, Shelley

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Adventures with Food… some photos

Recently Henry has been really into exploring his food.  Here are a few photos…


Our favourite birthday party activity - decorate your own cupcake!

Our favourite birthday party activity – decorate your own cupcake!

When asked what he liked about the birthday party, Henry said... "I really quite liked the frosting!"

When asked what he liked about the birthday party, Henry said… “I really quite liked the frosting!”

"Look at my big tummy!" says Henry after tasting something at mealtime.

“Look at my big tummy!”


Mmmm.. .french fries and ketchup

Mmmm.. .french fries and ketchup







Sucking the juice from a watermellon slice... yum!

Sucking the juice from a watermelon slice… yum!


Biting watermellon - look at the teeth marks!

Biting watermelon – look at the teeth marks!


Chocolate milk moustache

Chocolate milk mustache

"Turkey" smiles

“Turkey” smiles

Corn on the cob!  Tasting the "corn juice"... aka... loads of butter and salt!

Corn on the cob! Tasting the “corn juice”… aka… loads of butter and salt!

Corn caterpillars...  we cut the niblets off the cob and made caterpillars.  Henry tasted each and every one of them and then spit them onto his side plate.

Corn caterpillars… we cut the kernels off the cob and made caterpillars. Henry tasted each and every one of them and then spit them onto his side plate.


As you can see… we’ve been having lots of fun lately!


Cheers, Shelley


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Fun with letters and food… homemade tactile letters!

This idea comes from our friend Nicola Lott with Notch Hill Learning. Nicola is an early learning specialist who is all about playing with your kids.  We love it!

When I saw this project on her blog I knew it was one I wanted to try – it incorporates food and letters… perfect for Henry.  It was simple enough for an early morning activity, didn’t require anything special, and was something Henry could do mostly on his own.  Essentially, we spelt “Henry” with food (and lots and lots and lots and lots of glue!).  PERFECT!


We checked out the pantry and found some foods we wanted to explore.  We chose rice, dried beans, quinoa, ground flax and dried chickpeas.  Then we traced the letters of his name with glue and he got to dump and shake the food around to cover the glue.  We worked together with the larger food items (like beans), since they needed to be placed more than just shaken.  Then we covered the food again with lots and lots and lots of glue.  Serious… Henry would love to just make a huge pile of glue on some paper and call it done.  Ah… “art” is in the eye of the beholder :).   We let it dry for a few hours, gave it an extra shake outside and admired our work.



A word to the wise… if you kid’s like Henry then be ready to use half a bottle of white glue and have to clean the floor afterwards… but it’s all in the name of learning :).

We have it hung on the wall in the kitchen right now and I notice he likes to trace his fingers along the letters when we walks past.  Perfect for recognizing the letters in his name, and using food in another fun way.


Thanks Nicola 🙂

Cheers, Shelley

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Fun with Goop!


We made Goop… and boy was it fun!

This idea came from my observation day at the Preschool Henry will be attending this fall.  Goop… aka… water + potato starch (or corn starch) + anything else you want + food colouring = a sensory delight for both of us!


As you swirl it around it gets thicker and thicker… feeling slightly icky (my words) and slightly squishy (Henry’s words) between your fingers.  The more starch you add, the thicker it gets.  Once we’d explored the basic water & starch combination, we then checked out the dry goods section of our pantry to see what else we could find.

If memory serves we added cheerios, rice, quinoa, flour, beans, marshmallows, chocolate chips and smarties.  Then we added some colouring… one drop at a time.  The drops looked amazing – I wish I’d thought to take a photo of that.  By the time we were done we had one big brown blob of goop – not that attractive, but loads of fun.

For any kid – this would be fun.  For Henry – it was great to see him exploring the different foods and seeing what they do when they get wet.  Since he doesn’t eat by mouth, we talk a lot about how things turn “mushy” or stay “crunchy” or “break apart” inside your mouth.  The more he sees how foods change, the more comfortable he becomes with what happens when he puts something inside his mouth.

A word of caution though… be ready to get dirty!  Everything washed clean fairly easily, but the laminate floor was a bit of a challenge as the goop got in the grooves.  But since we also love mopping right now – this just made for our next fun activity 🙂

Cheers, Shelley

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Elmo!… and Goodbye Krista – we will miss you!

We went to the Infant Development Program (IDP) picnic this summer… and they had someone painting tattoos!   I realize this is not monumental… but Henry had never actually let someone paint on his face or arm before.  We’d approached… discussed… watched… left… but never actually got the picture painted.

So when he decided to actually do it here… I said “go for it!”.  He asked for Thomas… ended up with Elmo… and was absolutely THRILLED!

The picture says it all 🙂

Henry with Elmo

I made the casual comment that he go show Jen his Elmo.  He took me seriously – very seriously.  He then proceeded to spend the next 45 minutes (no exaggeration!) showing every family at the picnic his Elmo.  He walked up to a person, stuck out his arm, and yelled “Elmo!” as loud as he could.

No shyness here :).

What was just as fabulous… it didn’t matter if it was the 1st or the 10th time… each family was just as excited and enthusiastic in their response.  Thank you!

On a sadder note for us… the IDP program only goes up to age 3, so we need to say a very fond, very thankful, very disappointed farewell to Krista – our IDP consultant angel.  I still say – contacting them when Henry was about 1 month old was the best thing we have ever done.  We were in such a place of loss and confusion, and they provided the light at the end of the tunnel we needed.  If anyone is in need of support for their infant – take a look at their website to see if IDP can help!

We will miss you Krista!!!!!

Shelley, Shawn, Henry & Owen


🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂

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