Feeding Tube Awareness Week 2022: Thursday – Support

​Thursday, February 10th
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. 

This year I’d like to take a different approach to this topic, one that’s more reflective of me and my journey. I continue to love what I wrote in past years, and will weave some of those stories and thoughts here, yet I’m drawn to musing on my own shifts this time.

This how I started in past years…

“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.”

When I reread this now, I have so much compassion for this person. She was so scared, so overwhelmed, so certain that she wasn’t enough; wasn’t doing enough; couldn’t be enough regardless of how hard she tried (and cried). It was only when she reached her proverbial limit did she cry in front of anyone else. All other displays of perceived “weakness” were hidden far out of sight. It didn’t matter how kind anyone was, her inner dialogue said “if only they knew… if they really saw me they wouldn’t say those nice things”. I pushed away so many offers of connection and care, because I thought they were sign my weakness and my inherent “not good enough-ness”. I HAD to be good enough. I felt like Henry’s life, and my life by extension, meant I ALWAYS had to be fine. These mistaken beliefs started long before Henry, but boy was my experience with him really good evidence for what felt like their truth. I didn’t understand that I could be good enough AND feel overwhelmed / desperate / lost / need help. It was okay to ask for things, as long as I was “in control”. Any waiver from that [illusion] felt like I was loosing my grip on everything.

“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.”

Ah… connection. So many times I felt alone while standing in a room full of people. I did the best I could. I can say that now… and it’s been a hard fought journey to be able to say that honestly. I’m still reckoning with some of the things that happened in Henry’s early years… and I likely will be for years to come. It was sheer force of will and fierce tenacity that got us through some of those days. Now I am more able to experience the feeling of support and connection – real, honest, vulnerable, messy connection. I still struggle to show up honestly and vulnerably in my hardest times. A part of me still believes people will go running from the room in horror. But a larger, stronger part of me knows different. That it is in my hardest times that I learn and offer the most valuable of gifts. And I thank so many people for their support along my way.

“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.”

Ha! I cried like a frickin’ baby afterwards! I’m still amazed I contained as well as I did and I’m honestly curious if I looked as much a mess as I felt!

It’s almost 12 years on now and I’m still scared about a lot of things. For all my talk of faith, the fear is still there in a lot of ways I’m sure many parents can relate to. I’m scared kids will be cruel. I’m scared he’ll get laughed at or someone will see him eating through his tube and say its gross. Scared he will get picked on or that some well meaning (or not so well meaning) adult is going to be rude.  I still want to bundle him up, go back inside our bubble (ha! and to think I first wrote this line long before covid), and keep him safe.  But I know that’s not practical, realistic or helpful.

My list of things that I appreciate has expanded a bit over the years…

– 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.

– when our sitter and Henry’s support person learn how to help him eat… it matters.

– when people make note of the empowering language we use (for example, we don’t feed Henry, we help him eat)… it matters.

– when people refrain from asking him if he’s eating… going to eat… has eaten recently… or any other such questions… it matters. Henry eats at every meal, the same as I do. If your curious about him eating by mouth specifically, then ask me privately. But seriously, don’t ask him. It’s not helpful. (okay, I can feel my blood pressure going up… clearly this still triggers me).

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 I can truly feel that care now, in a way I never could before. I love that I now actually have friends that when I messy cry (like reeeeally messy cry), they cry too. Then they make me laugh.  I love that, even though our experience may be different than some, we are not alone.

Hugs, Shelley

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.

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.

 

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

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.

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

Henry’s First Seat

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

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

Feeding Tube Awareness Week 2018: Benefits

Wednesday, February 7th: Benefits

​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. 

 

 

When did feeding my child become a medical procedure?

I wrote a post by the same name – so long ago now, it seems – when we were first introduced to g-tubes and buttons, syringes and pumps, bolus feeding and commercial formula.  Somehow Henry “eating” was no longer in the picture.  It was my attempt to claw my way back into his life.  To reclaim my role as mom, in a world that seemed completely foreign.   Now sadly, the same kinds of thoughts are swirling through my mind… but for a very different reason.

It is actually a very exciting time around our home… Henry will be starting preschool this fall.  I haven’t wrote about it yet, as I wanted to get comfortable with the idea myself first, but there will be lots more to come.

But with all this excitement comes a few challenges, and it is one of these that has ruffled my feathers a bit.  You see, while at preschool Henry will participate at snack time both by exploring the same foods the other kids are eating, and by eating a small snack through his tube.  The preschool teachers will learn how to feeding him… something that is both exciting and scary for me.  To be able to do this Nursing Support Services – part of the public health service – is involved with the training, writing of a “care plan” and follow up inspections to ensure that Henry is cared for safely.  It’s a wonderful service designed to make sure schools and day cares are as inclusive as possible. And I am very thankful for it.

However, it was part of this care plan… one little step… that has my mind racing…

“put on gloves”.

It’s somewhere around step #10, after washing hands, warming up Henry’s food, and filling the syringe with water… but before putting on his extension tube.

“put on gloves”.

There is nothing that screams “NOT NORMAL”… “DIFFERENT”… “HAZARDOUS”… than the need to put on latex rubber gloves.  We are used to gloves in the hospital – everyone wears them.  Along with masks, gowns and sometimes face shields… it is the usual hospital uniform.

But do you need to wear rubber gloves to feed your child?  For most of us… the answer is no.

I get that eating through a food button isn’t exactly “normal” for most people, whatever “normal” may be.  I get that.  I’m not hoping for “normal”, but I am hoping for “normalization”… that lovely feeling that being different is just fine.  And all my interactions with the preschool teachers so far have left me with nothing but confidence. They talked about putting a food button on one of the dolls in the playhouse…using circular band aides to give all the kids food buttons… having all the kids lick their fishy crackers before eating them… or put teeth marks in their banana.  All things that make Henry’s food button a “normal” part of the preschool program.

So when I read those three little words… “put on gloves”… my dreams shattered.  Melodramatic perhaps… but that’s me.

The problem is, when I asked about the need for gloves, I was told a perfectly logical response.  Anytime a care giver may come in contact with bodily fluids they are trained to wear gloves.  When using a food button, it is common that a small amount of gastric fluid, or stomach juice, leaks out.  It’s not a lot, but it does leak.  For us, that’s just a part of life.  But I get that someone else may not want my kid’s stomach juices on her hands.  I get that.

And that’s my problem… I get it.  I don’t like it.  But I get it.

When I asked if they “had” to wear gloves, I was told that it has to be their choice.  Some caregivers choose not to, but they cannot be pressured.  So basically… I can’t grovel, beg, plead or in any way make them feel guilty.  No problem.

But what do I do if they choose to wear gloves?  I really do not want Henry to eat with someone wearing latex rubber gloves.  That is not “normal”.  My first instinct is to say I “will not” have Henry eating with someone who wears gloves.  But so far I haven’t come up with any better options.

I want him to eat.  I want him to sit at the snack tables with all the other boys and girls.  I want him to explore foods with his mouth.  And I want him to eat through his tube.  And I want it all to be okay.  And I’m sure in the end it will be.  But right now… my mind is racing and I’m just not sure how to turn it off.

So… I spill out my thoughts in hopes that just writing them down makes things better.  So often it does.  And I’m crossing my fingers that this time it does again.

Cheers, Shelley

 

 

Things I’ve Learned Since Starting a Homemade Blended Diet

This month is the 2 year anniversary since beginning Henry’s homemade blended diet.  It’s quite a milestone to me… 2 years since I started taking a proactive, interactive, hands on role in Henry’s food.  No more opening a can of food and calling it dinner.  Now we lovingly grow, wash, buy, choose, prepare, blend, and serve Henry’s meals… just like most other parents.

It’s been quite a journey.  And one that I couldn’t have done without a lot of help – mostly from other families who also chose against commercial formulas.  For a variety of reasons, we all chose real foods… and what a great choice it was!  Yes, commercial formulas do serve a purpose, and for some families it may be the best option.  But it’s not the only option.

In celebration of our 2 year anniversary, I’ve prepared a list of things I’ve learned along the way.  Enjoy 🙂

Top 10 (or more) Things I’ve Learned so far…

1. Follow your instinct! Even if everyone you meet tells you otherwise… if you believe something may be true… keep trying!  I tried for months to find a cause for Henry’s vomiting, asking if allergies could be involved.  But because of Henry’s other health issues, allergies were dismissed time and time again.  As it turns out… he is allergic to wheat, corn and dairy!  Every commercial formula on the market contains corn, so it didn’t matter what we tried, he kept getting sick.

2. Be careful what you read! The internet is a wealth of information, but not all sources are created equal.  When Henry was first diagnosed with hypotonia, I went online.  What a mistake!  By the end of 10 minutes I read every horror story there was, and was more confused than ever.  Ask people you trust, ask for reliable sources to read, be diligent in checking a source’s biases and credentials before believing what you read.

3. It’s okay to hide in the closet and cry… just try not to do it too many days in a row :).

4. Yams, bananas and avocados should not be combined in the same menu... depending on the amount of liquid added, the resulting food will be thick enough to build a house with!

5. Ask and thy may receive… don’t ask and you likely won’t!  There are so many things that we have gotten for Henry – from his customized tray for his first custom seat, to appointment dates months earlier than expected – all because we’ve asked.   Be polite, be specific… explain why it would be helpful.  When it comes to appointments, tell people if you can come on short notice, if you live nearly, if you’re schedule it flexible.  People often cancel… by filling last minute appointments, you help out them as much as they are helping out you.

6. You are your child’s (or your own) best expert.  Specialists are highly educated people in their own field of expertise.  However you are your child’s expert, and a valuable member of the team.  Do not feel that your input is not valuable, and if someone else is making you feel that way – stand up for yourself (politely, of course!).  In our experience, specialists often see the world through their own area of knowledge… but many things may be caused by more than one option.  It’s our job to listen to all the advice, and then form our own conclusions based on what we’re heard.  Do not blindly follow advice you do not understand or fully agree with.

7. Keep asking until the answers make sense!  (Ask and ask again!) If you don’t understand something… keep asking until you do!  Baring emergency situations, most things can wait a little bit longer… long enough for you to better understand what is involved.  I was told by so many people that Henry would never tolerate a homemade blended diet, but the reason’s never made sense.  Yes, he has low tone.  Yes, this may affect his digestion.  However it never made sense why this meant he would not be able to eat real foods.  As it turns out, he tolerates a blended diet better than any commercial formula.

8.  You are not alone! Even if it is a blog from someone across the world… there is someone out there who can relate.  We felt so alone for Henry’s first year.  We basically didn’t leave the house until we had to, except for family events.  And only if we checked and double checked that no one was sick.  While this was needed to help keep Henry healthy… we were so isolated.  We were so alone.  We didn’t realize that all new parents struggled.  We didn’t realize that all new parents cried.  We just didn’t realize.  We did what we needed to do.  But upon reflection… we needed to get out more – even if it was just one of us as a time.  We needed to know that we weren’t so alone.

9. Food is so much more than vitamins and minerals.  By making Henry’s food ourselves, we empowered ourselves to be parents.  We lovingly grow, select, wash, buy, prepare and serve Henry’s food… just like most other parents do.  And it means so much more.  Yes, some people do need to eat commercial formulas.  They do serve a purpose.  But for us… real foods make such as difference.

10. Henry does not have “bolus feeds”… he “eats” through his tube.  Simple changes make a big difference.  Language is so important.  Feeding your child is not a medical procedure! Medical staff may need to use medical terms for their own purposes.  However you choose how you talk about mealtime… normalize the experience as much as possible.

11. A good blender is key to your success.  We use the Vitamix, but there are others.  When reading blogs beforehand, most people commented they liked the Vitamix, so that is why we got it.  It’s quite an investment, but if you’re using it for medical purposes, the company will give you a discount.  Contact them directly as opposed to getting it at Costco or somewhere else.  It worked out cheaper for us to go through the company.  We’ve had some problems with ours over the past two years, but the service has always been great and they get things done as fast as possible.

12.  Come up with a system that works for you.  I used to make Henry’s food daily, the same time as I made our dinner.  Now I make it is batches of 3, as this much as be put in the fridge and I don’t have to freeze it.  Whatever works best for you… a good routine makes things easier.

13 Syringe vs a pump. Go with what works.  Now that we’re using a syringe… it is soooooo much easier!  But Henry couldn’t tolerate using a syringe for a long time… he needed to slower, steadier pace of the feeding pump.  Try different things – try different syringes… find out what works for you.  Try not to get discouraged when the food goes splattering all over the kitchen wall (like last week!), or you realize the extension tube can undone and food’s been leaking out for that past hour.  It’s ain’t nice… but such is life at times.

And…

Hang it there!  It does get easier! 

Henry still throws up (but not near as much as he used to);

I still have flashbacks from his first months of life (but not as often);

We’re all a little scarred (but we will heal);

I still cry (but I don’t do it in the closet);

It used to take us an hour to “feed” Henry.  And then we would not be able to go for a car ride until about an hour after he ate, because he would likely throw up.  Now, he eats with a syringe… it’s takes about 20 minutes… and we can hop in the car and go.

Life keeps changing and we keep learning more.  Cheers, Shelley

Just For the Fun of It… Felt Pen Leg Drawing!

I’d love to say there was some therapeutic basis for this… but really it was just fun!  (and a little cathartic, I must admit!).  How many times have you told your kids not to write on their hands?

This time… I said “let’s do it!”

 

A word to the wise… in my experience Crayola really is better… and much easier to wash off!

Paper Henry

Behold… Paper Henry!!!

He’s a work of art, isn’t he?  I must say… I’m particularly proud 🙂

Henry had been asking “how” he swallowed and what happened to the food once it went into his tummy.  Being 3… he’s all about bodily functions and how what starts out as food ends up as pee and poo.  So, we capitalized on his curiosity and started talking about what happens to our food when we eat.

We started our journey at our local library and came home with a load of books.  Combined with a few online videos (see a list of resources below), we began to learn.  Being a visual person myself, and knowing that Henry was starting to get interested in drawing and crafts, we decided to make a Paper Henry.

I must admit, it was really a work in progress… begun without much of a plan.  But it turned out pretty well… even if I do say so myself :).

Here’s what we did:

• Drew an outline of Henry on a large piece of white flip chart paper.  We did with clothes and diaper on – next time I’d either take the diaper off or free draw, as this skewed the proportions.
• We tackled digestion first, as this is what was interesting at the moment.
  • we used a bolus extension tube for his throat, but any piece of tubing would do.
  • next the stomach – Henry was into sparkles at the time, so you’ll see lots.  We found some dried food in the cupboard that Henry routinely ate in his tube food, and glued that on.  I think he has some chickpeas, rice, grains, and a marshmallow.  Since Henry’s g-tube goes into his tummy, we glued an old button on, in about the right place (it goes without saying… all proportions are approximate!)
  • The kidneys are all glitter… nice touch I think 🙂
  • The small intestines are green gift wrap ribbon and the large intestines are pipe cleaners (green in Henry’s favourite colour right now).  We looked in the books to see the length of the intestines and measured them out by laying the ribbon out across our family room floor.  I had no idea how long it was!
  • Henry was good with this, so I decided to leave it at that, as Paper Henry hung in our front room for quite some time :).
• Next we did bones using a combination BBQ skewer sticks and tooth picks. Shawn was our researcher and we labeled the various bones as we went.  We didn’t worry about all of them… but did quite a few and added in any that Henry specifically pointed out.
• We coloured the brain with sidewalk chalk, and when I asked Henry what he was thinking of… he said cars.  So we added in a car sticker.
• The heart is just that… a heart.  Henry is practicing with scissors, so I traced the lines and he cut it out.
• The lungs are clear bubble wrap… we got a delivery that week, so it was serendipitous :).
• The final touch… one googly eye (we LOVE googly eyes!).

Paper Henry still hangs lovingly in our upstairs hallway.  We don’t say “hi” to him quite as much as we used it… I hope he isn’t getting lonely.  He took about a week to do – each evening I would prep what we would focus on the next day… I guess I miss being in front of the classroom (I’m a college instructor before becoming a full time mommy).

He served his purpose well, and we still refer to him when we talk about eating and other bodily functions :).

Cheers, Shelley

 

 

Online Resources (that I thought were good enough to save):

Skeletal system: http://kidshealth.org/kid/htbw/SSmovie.html

The Body: http://www.youtube.com/watch?v=0nKz81R327w

Swallowing: http://www.youtube.com/watch?v=0naM78LJZ_A (thanks to Amina, our OT, for this one)

Games we play with food… updated

I’ve added a bit more onto the previous post… Games We Play with Food.  Check it out for some new ideas and additional photos.

Cheers, Shelley