Henry's Homemade Formula

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

Feeding Tube Awareness Week 2019 – Thursday’s Topic: Support

Today’s Topic: It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters. 

When I read my post from last year, I decided I only wanted to change a word or two.  So here’s an (almost) encore from 2018’s post about support.  

 

Whether it be a kind word, a hug, an offer to help or a smile… having your support means so much to us. When Henry was little, it was actions – help by picking up groceries, make dinner, ensure Shawn and I were eating and sleeping so we could take care of Henry.  Listen as I cried.  There was nothing anyone else could “do” to help Henry.  There was nothing anyone else could “say” to help Henry.  But they could help ensure we were taking care of ourselves.

It was the seemingly little things that matters so much.  I still remember the first playgroup we went to through the Infant Development Program – the lady there seemed like an angel.  For the first time in months we felt like we weren’t alone.  There were other families who could relate, there were people to help.  Yes… there was still something “wrong” with Henry, but suddenly our bubble got a little bigger and we weren’t so alone.

I still remember going to the first parent meeting at preschool; so scared because we had to introduce our children.  I was so scared to talk about Henry’s feeding tube.  Scared what other parents would think.  I was sweaty, clammy and could barely talk.  And it was fine.  People were fine.  I just about cried.

Fast forward almost 9 years and other people’s support still matters so much.  More than most people realize.  It’s the understanding that this is hard.  Nine years later and it’s still hard.

His tube still plugs… I still spray food all over the walls… I still go to Science World and forget his tubes so we have to get back on the Skytrain and go home… I still serve dinner and hope deep down that he’ll try some hummus tonight… that today will be the day he decides to start eating.  I still cross my fingers behind my back and say a little prayer every time he gets weighed at the doctors, hoping he’s gained 1/2 pound.

And I’m still scared.  Scared kids are going to laugh at him.  Scared someone’s going to say “that’s gross”.  Scared he’s going to be picked on.  Scared well meaning (or not so well meaning) adults are going to be rude.  And I want to bundle him up, go back inside our bubble, and keep him safe.  Yes, I know this isn’t practical.  Or realistic. Or even possible.  Yes, I know I need to support him to stand on his own to feet and have faith in the world.

 

So…

– When my Mom comes into town and feeds both the boys dinner… it matters.

– When people serve ice cream with whipping cream on top, so Henry feels he can participate in the meal… it matters.

– when Henry “serves” people appetizers (when they want them or not!), and people recognize this is him participating in the meal… it matters.

– when a stranger at the next table is curiously kind, and stares but not rudely… it matters.

It all matters.  The kind and the not-so-kind.  It shapes who we are as people, all of us.

I love that we have so many people around us who care.  I love that when we need help, there always seems to be someone available.  I love that when I cry, my friends cry to, and then they make me laugh.  I love that, even though our experience may be different than some, we are not alone.

Cheers, Shelley

 

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Feeding Tube Awareness Week: 2019 – Wednesday’s Topic: Benefits

Today’s Topic: What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding improved your child’s life? Dispel myths that people have about tube feeding.  

For this post I had the pleasure of interviewing Henry.  

20190206_185302

Mama: What are things that you like about your food button?

Henry:  Well uh… it means I can eat stuff that doesn’t taste good without tasting it.  I don’t need to worry about mom saying “eat your vegetables” because I’m just eating them.  

Mama: What are things that you don’t like about your food button?

Henry: There’s some foods that I wanna eat but I cannot taste, like cookies.  I don’t want to lick them because I’m worried about getting a big crumb.  It’s happened to me with big chunks in smoothies.  Sometimes when people offer me food I can’t eat it right away.  Sometimes I bring the food home and put it in my blender.  

 

 

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Feeding Tube Awareness Week 2019 – Tuesday’s Topic: Nutrition

Today’s Topic: 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.

3561567_orig

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.  We are not being pessimistic, or giving up… we are living our reality.

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 9 years of his life.  And in almost 9 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).

It has taken Shawn and I a long time (perhaps too long, perhaps not long enough) to come to terms ourselves that Henry is just not able to eat.  We doubt, we cajole, we second guess (ourselves as much or more that Henry), we pray, we cry, and we hope.  But what we have a hard time with is faith.  But that is where we are at.  Or at least where I am coming to.

Faith.

Faith that everything will work out okay.  Faith that how that “okay” is defined is still unknown.  Faith that our baby will be okay.  More than okay.  Our sweet baby will not only be okay, but is and will always be an amazingly perfect human being.  An amazing human being with a food button – not despite it, or because of it – but with it.  It is as much a part of him as his arms, legs, eyes and mouth.

Faith that Henry knows his body.  Acceptance that we are here to support his journey, not to dictate it.  That power struggles, hunger-inducing programs, and force feeding is not a part of our journey.  Others may choose it to be a part of their path, but we choose it not to be a part of ours.

It is easy?  Not for a single solitary moment.

Is it worth it?  Yes.

 

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Feeding Tube Awareness Week 2019 – Monday’s Topic: Awareness

fta-week-logo-2018_1_orig
The Feeding Tube Awareness Foundation launched Feeding Tube Awareness Week  as a way to increase knowledge and support for “tubies” and their families.  Each year, they ask people to share their stories about using feeding tubes in their daily lives.
Monday, February 5th: Awareness
Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding.
Henry was born with a muscle condition that results in low tone, or weaker muscles.  Despite years of testing, his condition remains undiagnosed.  We know a lot about what he does not have, but we do not know exactly what his condition is.  What we do know it that it is appears to be a genetic condition, but its origin is not in one of the “common” genetic sequences.  Having said that, we are told there are thousands of obscure genetic conditions. We are actually in the process of genetic testing, for the second time, as his neurologist and genetics team feel there has been enough new knowledge gained in the past 5 years that a second round of genetic testing could be helpful.
Because Henry’s condition is undiagnosed, it also means there was no “road map” to follow – no other cases to glean information from about what to expect.  As with all things, there are pros and cons to this – no precedents meant no idea what to expect.  But it also meant no preconceived ideas of what he might, or might not, be able to accomplish.  So as far as we’re concerned… the sky’s the limit :).
When Henry was born, he was a very quiet baby.  He did not move, did not cry, did not fuss.  He couldn’t – his muscles were too weak to.  Seeing him now, he’s an active, outgoing, almost 9 year boy.  His muscles are still weaker than his peers (and they likely will always be), but with some accommodations he can participate in and enjoy most of the same activities as his classmates.
Henry continues to eat exclusively through his food button (a Nutriport brand, low profile gastronomy tube).  Because we make his food ourselves, he may very well be one of the best-fed 8 year old boys we know…
…broccoli, asparagus, kale, carrots, quinoa and broiled chicken for breakfast anyone…?!?
That’s not to say he doesn’t eat chicken nuggets, and chocolate cake from time to time as well.  But we follow a well planned guideline when making his food, so I’m confident he’s getting the nutrition he needs.  Getting him the calories he needs to gain weight is an ongoing struggle, and we’ve definitely had our scares along the way.
He continues to taste foods by mouth, and rides what I lovingly refer to as the roller coaster of eating by mouth.  He’s on a current “down” – eating almost nothing by mouth, but accepting foods quite readily through his tube.   Last year around this time he was on an “up” and would eat up to a 1/2 cup of apple sauce, but was more resistant with his tube.  Shawn and I are really coming to a place where we allow him control over his body to the best as we can.  If he’s hungry he’ll eat (through his mouth or tube).  If he’s not, we support that.  Given he through his tube, he has precious little control over what he eats, we are really trying to honour his independent is ways that are important to him.
We’ve actually stopped all outside occupational therapy and physical therapy, other than what is naturally built into our lives.  We found that regardless of what “extra” things we did, it was not affecting his desire or ability to eat.  If anything, it was negatively affecting it.  For now, he’s a happy, stubborn grade 3 student who is enjoying life much like any other student in his class.  Our home and our yard still naturally includes lots of gross motor activities – over the years we’ve naturally designed our space like that.
While his “swallow” muscles have strengthened over the years, it is physically impossible for him to bite, chew and swallow a sandwich, for example.  His swallow is not strong enough to clear his mouth and push the food all the way down to his stomach.  The resulting “pooling” that remains in the upper throat area puts him at risk of aspiration (breathing in food/liquid).  However as he has had dozens of chest x-rays over the years and has shown no signs of aspiration, he has the go ahead to continue exploring foods by mouth, despite this risk.

 

Henry received his first feeding tube at 2 month of age – a nasal-gastronomy tube (or ng tube).  This type does not require surgery, but is highly invasive in that it goes through the nose, down the back of the throat and into the stomach.  Just after his 1st birthday, Henry had surgery to receive his g-tube.  Almost 8 years later he still has his food button 9 (albeit with many changes along the way) and we are so happy he’s getting the nutrition he needs to be a happy, healthy young boy!

Cheers, Shelley

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Henry’s Electric Bicycle!

How amazing is this…

20171125_142722

 

The journey to finding Henry a bike starting over a year ago, in the fall of 2016.  Henry was rapidly outgrowing his toddler bike, and the seat was already raised up well above the safe limits.  However Henry wasn’t strong enough to peddle a larger bike, and he so wanted to ride along with his brother.  So we kept pushing the limits and I kept hoping inspiration would strike for what to do next.  The seat post never broke, but Henry’s legs got so long it was impossible for him to ride the toddler bike anymore.

He went one summer not riding anything, as he was so frustrated trying to use a bike that matched his height.  We used trail-a-bikes as a family, which he loves, but it broke my heart to not have a bike for him to ride.  So the search began…

I spent close to a year researching and visiting any organization I could think of.  Among the many places I contacted were Sunny Hill Health Centre for Children, Bikes for All, Freedom Concepts, E Special Needs and Adaptive Mall.  If you know someone needing an adaptive bike or other adaptive equipment, everyone we met from these various organization were amazing!

But the challenge soon came clear – Henry isn’t “disabled” enough!  

There are some amazing adaptive bikes and trikes available, but Henry doesn’t need that much support.  He can ride a typical bicycle, he just doesn’t have the muscle strength to turn the wheels, nor the core strength to ride with two wheels.

This epiphany (and yes it was a major Ah-Ha moment!) led me down a completely different path… motors!

But this was not simple.  Ask someone in a bike store what they think about a 7 year old on an electric bike and you get worried responses.  Toss in that he has a physical disability and apparently people think you’re crazy.

As life often does, inspiration came from an unlikely place.  Our local elementary school hosts a bike fair in the spring, and in 2017 the wonderful folks at OHM Bikes volunteered to host the repair tent.  And we met Liam…

And Liam met Henry…

And Liam said yes!

It might very well have been the happiest day that year!  It was the first time someone actually met us and looked at Henry and said… yes, I think we can do that. 

As it turned out, they couldn’t.  But not due to any lack of trying!  Their battery and motor system simply didn’t fit on the size of bike Henry needs.   But it was a start.  It was acknowledgment that I wasn’t crazy… this might work… and it might be brilliant!

And it gave me the push I needed to keep going.  Shawn got more involved and started talking to people he knew through HUB and the Vancouver Bike Club, and based on what he learned, he started researching online. And then he found E Bike BC.

EbikeBC-Logo

Ali and his team at E Bike BC talked to us, learned about what we wanted to accomplish and said Yes!IMG_20171110_112910

E Bike BC offers electric conversion kits, meaning you turn your existing bike into an electric bike, with the help of their know-how and components.  They had never worked with a child’s bike before, so they spent countless hours researching and finding parts to fit.  Their components are modular, so the battery pack could be designed to fit Henry’s bike and they even custom made some parts, so the battery pack could fit low down in the bikes centre, so the bike wouldn’t be too top-heavy.

Shawn put in a lot of hours at this stage, working with Ali to ensure the bike worked as we needed it to, and doing adjustments on the hand brakes and other parts to ensure Henry could use it effectively.  The technical details aren’t my specialty, but if anyone wants more information, please do not hesitate to contact us and I’ll ask Shawn to respond!

So, now we had a bike with a motor… but Henry needs training wheels in order to ride. Typical training wheels are designed to transition a child to two-wheel riding.  As such, they are not flush with the ground, and most can be slowly adjusted higher until a child no longer needs them.

But Henry needs a set of good, solid wheels – and I found Fat Wheels!

fat wheels

Fat Wheels Adaptive Training Wheels are adaptive training wheels for children and adults needing additional balance to ride a bike, whether it be a person with a disability, an older adult or anyone who wants to ride a bike without the fear of falling.

 

What is great is the whole system can grow with him, with relatively little cost.  The adaptive training wheels can be moved to larger bikes (although eventually he will need to go to a larger size).  The electric assist motor can be moved also, with only the front wheel (where the actual “power” is) needing to be replaced (since the wheel is specially made with this built in).  The battery pack and other components can be transferred.  And because Shawn is familiar with bike mechanics, we can order whatever might be needed and he could do the work himself.

Getting Henry back on a bike and riding independently has been our biggest goal, and our biggest challenge over the past year.  But seeing the sheer joy on his face the first time he rode his bike… no doubt, I’d do it all again!

Look at him go!

 

Financial breakdown:

Henry’s bike: $40 (used off Craigslist)

Fat Wheels Adaptive Training Wheels: ~$200.00 (including shipping from the US)

Electric Bike Conversion Kit: ~$1500.00 (including all materials, time and installation)

I choose not to pursue funding for his bike, although I was told by several people I could.  Given that it is not actually an adaptive bike, it would be more challenging.  And funding typically must be approved before any purchases are made.  I wasn’t willing to wait. Frankly, I had enough set backs just getting the bike, that I didn’t want to go through the struggle of advocating for funding.

Cheers, Shelley

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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: Support

Thursday, February 8th: Tell people about why their support matters.

IT MATTERS! 

 

Whether it be a kind word, a hug, an offer to help or a smile… having your support means so much to us. When Henry was little, it was actions – help by picking up groceries, make dinner, ensure Shawn and I were eating and sleeping so we could take care of Henry.  Listen as I cried.  There was nothing anyone else could “do” to help Henry.  There was nothing anyone else could “say” to help Henry.  But they could help ensure we were taking care of ourselves.

It was the seemingly little things that matters so much.  I still remember the first playgroup we went to through the Infant Development Program – the lady there seemed like an angel.  For the first time in months we felt like we weren’t alone.  There were other families who could relate, there were people to help.  Yes… there was still something “wrong” with Henry, but suddenly our bubble got a little bigger and we weren’t so alone.

I still remember going to the first parent meeting at preschool; so scared because we had to introduce our children.  I was so scared to talk about Henry’s feeding tube.  Scared what other parents would think.  I was sweaty, clammy and could barely talk.  And it was fine.  People were fine.  I just about cried.

Fast forward almost 8 years and other people’s support still matters so much.  More than most people realize.  It’s the understanding that this is hard.  Eight years later and it’s still hard.

His tube still plugs… I still spray food all over the walls… I still go to Science World and forget his tubes so we have to get back on the Skytrain and go home… I still serve dinner and hope deep down that he’ll try some hummus tonight… that today will be the day he decides to start eating.  I still cross my fingers behind my back and say a little prayer every time he gets weighed at the doctors, hoping he’s gained 1/2 pound.

And I’m still scared.  Scared kids are going to laugh at him.  Scared someone’s going to say “that’s gross”.  Scared he’s going to be picked on.  Scared well meaning (or not so well meaning) adults are going to be rude.  And I want to bundle him up, go back inside our bubble, and keep him safe.  Yes, I know this isn’t practical.  Or realistic. Or even possible.  Yes, I know I need to prepare him to stand on his own to feet and face the world – both the kind and the not so kind.  But a mama can dream just the same.

 

So…

– When my Mom comes into town and feeds both the boys dinner… it matters.

– When people serve ice cream with whipping cream on top, so Henry feels he can participate in the meal… it matters.

– when Henry “serves” people appetizers (when they want them or not!), and people recognize this is him participating in the meal… it matters.

– when a stranger at the next table is curiously kind, and stares but not rudely… it matters.

It all matters.  The kind and the not-so-kind.  It shapes who we are as people, all of us.

I love that we have so many people around us who care.  I love that when we need help, there always seems to be someone available.  I love that when I cry, my friends cry to, and then they make me laugh.  I love that, even though our experience may be different than some, we are not alone.

Cheers, Shelley

 

 
Today’s Topic is: It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters.1

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Feeding Tube Awareness Week 2018: Benefits

Wednesday, February 7th: Benefits

IMG_20171112_110157​For this post, Henry helped by sharing his thoughts on the questions…

What has tube feeding meant for you?

Henry: Sometimes I like it but sometimes I don’t.  I like it because I never need to worry about choking. I don’t like it because I can’t taste anything. 

 

What benefits have you seen from tube feeding?

Henry: I get to eat what everyone else is eating.  We put in my left over food from dinner.  I get to choose what goes in sometimes.  I put in my chocolate coin from White Spot.  And part of my hamburger from McDonald’s. 

 

 

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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).

3561567_orig

 

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.

Leave a comment »

Feeding Tube Awareness Week 2018: Fired Up About Nutrition!

fta-week-logo-2018_1_orig
The Feeding Tube Awareness Foundation launched Feeding Tube Awareness Week seven years ago as a way to increase knowledge and support for “tubies” and their families.  Each year, they ask people to share their stories about using feeding tubes in their daily lives.  The theme for 2018 is Fired Up About Nutrition!
Awareness: Fired Up About Nutrition
Monday, February 5th

Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding.
Henry was born with a congenital myopathy – a muscle condition – that results in low tone, or weaker muscles.  Despite years of testing, his condition remains undiagnosed.  We know a lot about what he does not have, but we do not know exactly what his condition is.  What we do know it that it is appears to be a genetic condition, but its origin is not in one of the “common” genetic sequences.  Having said that, we are told there are thousands of obscure genetic conditions.  It may be we never know the exact cause, however new information is being discovered all the time, so we never know.
Because Henry’s condition is undiagnosed, it also means there was no “road map” to follow – no other cases to glean information from about what to expect.  As with all things, there are pros and cons to this – no precedents meant no idea what to expect.  But it also meant no preconceived ideas of what he might, or might not, be able to accomplish.  So as far as we’re concerned… the sky’s the limit :).
When Henry was born, he was a very quiet little guy.  He did not move, did not cry, did not fuss.  He couldn’t – his muscles were too weak to.  Seeing him now, he’s an active, outgoing boy.  His muscles are still weaker than his peers (and they likely will always be), but with some accommodations he can participate in and enjoy most of the same activities as his classmates.
Henry continues to eat exclusively through his food button (a Nutriport brand, low profile gastronomy tube).  Because we make his food ourselves, he may very well be one of the best-fed 7 year old boys we know…
…broccoli, asparagus, kale, carrots and broiled chicken for breakfast anyone…?!?
That’s not to say he doesn’t eat chicken nuggets, and chocolate cake from time to time as well.  But we follow a well planned guideline when making his food, so I’m confident he’s getting the nutrition he needs.   He continues to taste foods by mouth, the current favourites being whip cream, vanilla ice cream and peach/banana smoothies.  What he enjoys by mouth changes over time, ranging from sweeter tastes, to stronger flavours like garlic hummus and guacamole to blander flavours like apple sauce.
While his “swallow” muscles have strengthened over the years, it is physically impossible for him to bite, chew and swallow a sandwich, for example.  His swallow is not strong enough to clear his mouth and push the food all the way down to his stomach.  The resulting “pooling” that remains in the upper throat area puts him at risk of aspiration (breathing in food/liquid).  However as he has had dozens of chest x-rays over the years and has shown no signs of aspiration, he has the go ahead to continue exploring foods by mouth, despite this risk.

 

Henry received his first feeding tube at 2 month of age – a nasal-gastronomy tube (or ng tube).  This type does not request surgery, but is highly invasive in that it goes through the nose, down the back of the throat and into the stomach.  Just after his 1st birthday, Henry had surgery to receive his g-tube.  Almost 7 years later he still has his food button and we are so happy he’s getting the nutrition he needs to be a happy, healthy young boy!

Cheers, Shelley3561567_orig

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