Henry's Homemade Formula

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

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

 

 

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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

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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!”

 

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

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Paper Henry

Behold… Paper Henry!!!

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

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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!).

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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)

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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

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Goodby Andrea… we will miss you!

It’s a sad day around here… we have to say goodby to our beloved physiotherapist, Andrea.  Actually… we’ve known about this for about a month, but as we are about to meet our new PT next week, it’s got me thinking about this again.

Andrea hasn’t moved, or changed jobs… she’s been transferred to a different region.  All fine and dandy for the company… I get that they have to reassign practitioners from time to time as case loads vary.  However for us.. we’re devastated.  OK… perhaps that is being a bit melodramatic.  But honestly, Shawn & I were both floored when she casually mentioned this at our last appointment.  Leaving… what???

We love Andrea.  And that is NOT being melodramatic!  She has been with us since Henry was 6 months old and has had a wonderful… magnificent… monumental… indescribable… impact in our lives.  Perhaps its because we have seen such amazing strides in Henry’s development; perhaps it’s because he loves it so much when she comes to “play”; perhaps it’s just everything.  But whatever it is… we are sure going to miss her!

All this has also got me thinking, once again, about how lucky we are.  The people who surround us and support us with Henry’s development have each left their own unique mark on our lives.  And even though we don’t see them as often, they’re impact is huge just the same.  Our practitioners from the Centre for Ability – Andrea (soon to be Fiona), Hannah (formerly Shannon before she went on maternity leave) and Amina; along with Krista, our Infant Development Coordinator – know more about Henry and our family than many of our friends and family do.  They know how hard Henry has worked for each milestone he reaches… they know that what seems “typical” was actually the result of months of “play” (aka exercises)… they see that for Henry, all this is just the way life is – he doesn’t know any different.   When we look back, we see how lucky we truly are for everything we have received.

So… from Shawn, Henry and I… thank you!

 

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Games we play with food

I have been working on this post for months and never managed to get it as “finished” as I hoped.  Such is life with 2 kids… here is what I have so far (with a few less photos than I originally intended)…

I remember reading very early on how important positive interactions with food are for a young child.  How we approach and interact with food as an infant and toddler can have lasting effects through adulthood.  As we started experimenting with solid foods with Henry, and quickly learned that this might not go as planned… we started looking for other ways to integrate foods into our lives.

With this in mind… we play!

We aim to get dirt… messy… slimy… covered in food!

Since Henry can’t interact with foods as many toddlers do – by eating them with his mouth – we interact with foods in other ways.  I’m sure many parents would cringe to hear that we purposely “waste” food… but I don’t see it as a waste.  I see it as a crucial step in the process of my child being and staying comfortable with foods and learning how to eat with his mouth.

I’m the one who cringes when I hear other parents saying things like…

  • “don’t play with your food”
  • “stop playing with your food and eat it”
  • “don’t touch that unless you’re going to eat”

And if Henry has heard too, then I whisper in his ear that other families have different rules about food that we do.  At our house, playing with and touching our food is a wonderful thing! You are more than welcome to touch it and then decide not eat it.

So… to this end, we try to play food related activities on a regular basis.  Some are old faves and other may be new.  I’ve included a list of the ones I can think of, and will add more as they come up.  If you have an suggestion for a food-related activity, I’d love to hear about it!

 

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Bean Box

This one came from Beth, the facilitator at our local Strong Start centre.  She always amazes me with inventive ideas, and I loved this one.  Instead of an indoor sandbox, she used assorted beans one day.  Easier clean up… fun noises… lots of colours and textures… great for fine motor skills… easily reused… what could be better! And Henry still likes playing with it a year later.  I keep ours in a clear plastic container – an “under the bed” style – and it is stored under a chair in our family food.  I’ve got a metal bowl, spoons, small plastic cups, mini whisks, assorted measuring spoons, some wooden salad tongs and anything else that looks fun.  For beans, I shopped the bulk department and got kidney, black, and soya beans, plus some lentils and chickpeas.  Basically… I chose based on price, colour, and size.

It’s super easy to clean up afterwards with a broom or small vacuum and most of the beans from the floor can be put back into the bin (unless they got wet or there was a lot of cat hair on the floor that day!).  Most importantly, Henry quickly learned all the food names so when we put them into his blended food… he recognizes them, is excited to add them in, and requested them by name.

Food Pictures

While perhaps not a “game” per se, Henry loves our food pictures and still interacts with them and uses them to request things to eat or drink.  Our OT, Amina, suggested this one quite some time ago when Henry wasn’t talking yet.  I cut & pasted images from the internet, sorting them into different food groups.  My goal was to use foods that we commonly have in our home and ones that he will see at dinner, or may be put into his blended food.  I ended up with 3 pages of images, and he quickly learned all of them.  He still gets a kick out of the fact there are “peas” and “chick peas” and “egg” and “eggplant”… and that they all look very different!  The most commonly requested item is, of course, chocolate milk!

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Play Food

Henry has a whole range of play food, both a soft-cloth style from when he was younger (from IKEA) and the more typical hard-plastic type.  To this I’ve also added some empty containers, like cream cheese, yogurt, etc.  He’s often loading up his shopping bag and requesting more foods from our pantry cupboards, so he can carry them around the house.  He’s not quite old enough to be into “pretend play” yet… so we’re not at the stage for pretend cooking and such, but I can see it just beginning.  I’m looking for a small play kitchen for his playroom… if anyone knows of a good one, I’d love to hear it!

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Play Kitchen

This is new for Christmas this year (thanks Grandma!).  Certainly not a new idea… I knew I wanted to get Henry a play kitchen as soon as he was old enough to enjoy it.  So once he started playing with the set at playgroup, I started looking for one for our home.  We decided upon the Ikea kitchen because of it’s compact design, small size, realistic look and great accessories.  It was a bit pricey, but I decided to go with this instead of a second hand model so that I could be sure it would for Henry.  And I love the built in microwave, baking supplies and pots and pans.  Grandma also got some extra play food to go with it… so we can eat to our hearts content!

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Food stamping

I remember doing stamping as a kid, but hadn’t tried it with Henry until we went to the Burnaby Rhodo festival earlier this year.  One of the activities was stamping with food and leaves, and the images are really cool. It took Henry a bit to get the hang of it, but I think he enjoyed it.  A few weeks later we did stamping at playgroup… not with food mind you, but he was really into it.  I think this is an activity that he’ll enjoy more when he’s a bit older (and stamp supplies are now on our Christmas wish lists!).

Veggy Gardening

I’d have a garden regardless of whether Henry had eating challenges or not… but I love seeing how much he loves being out in the dirt and “helping” with the fruits and veggies.  I think gardening – whether it be growing a tomato plant or some herbs in a few pots on a balcony – or something larger, it a wonderful way to introduce kids to where food comes from and how it is grown.  As soon as we moved into our new place last year I systematically began digging up the grass… and Henry was right beside me the whole time with his little shovel and bucket!  Now he can name just about all the plants, even before the actual veggies have started to form.  He knows what they will become and recognizes them in the store and in our fridge.  He loves helping to pick the veggies for our dinner salad each evening, and then washing them in the sink.   This year we have a whole range of things in our little garden patches: lettuces, swish chard, beets, green onions, spinach, carrots, peas, beans, broccolli, chauliflower, blackberries, blueberries, strawberries, raspberries, plumes, apples, about 10 different herbs, zuccinni, tomotoes.

Some are thriving, others are suffering with all the rain.  We talk about what it takes for plants to grow big and healthy… which segways beautifully into what it takes for people to grow up big and healthy!  I have no idea if Henry will one day be a “picky eater”… but I’m sure helping to grow broccolli can’t hurt!

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Table Art

This one started rather unexpectedly from an overturned bowl of yogurt one afternoon.  Instead of just cleaning it up and going on with our day… we painted!  We used every utensil type implement we could find… including our hands and fingers… and created a masterpiece.

Then… to add to our artistic glory… we added ketchup!

Eating in the backyard - a favourite summertime activity!

Eating in the backyard – a favourite summertime activity!

Picnics

We love eating outside, not just for the lovely weather, but because we can experiment with foods even more outside.  Gone are the worries of messy floors, walls or chairs!  Sometimes we’re at tables, other times on our picnic blanket.. but where ever we are, we’ll be enjoying a good meal.

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Carving Pumpkins

This Halloween Henry was right into cleaning out the pumpkins.  I’m not sure if Shawn ever convinced him to actually touch the inside of the pumpkin, but he was right there helping with the “tools”.  We try to get him to feel as much as he is willing, but he still is a bit aversive to new textures and foods he is unfamiliar with.  This is typical of lots of toddlers, but I still think more so with Henry.  However he is getting so much better than he used to be!

IMG_2836Easter & Other Holidays

Any chance we have, we incorporate food into family celebrations.  This is hard as lets face it… just about any North American holidays is synonymous with food!  Here’s an example of our Easter treasure hint.

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Henry loves to bake… we make cookies, pies and bread-machine bread most often.  He has his own apron (thanks to Grandma Gail) and stands on a kitchen chair at the counter to help.  Here he is trying out the rolling pin.  The only problem… someone has to eat the fruits of our labour!

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Marshmallow Building

I think I may have had more fun than Henry with this one!  Reminds me of some corporate training group activities I’ve done in the past.  It’s great for sorting by colour, size (depending on your choice of marshmallows), fine motor skills, and what kid doesn’t love building thing!  Plus, we practiced munching the marshmallows with the front of our teeth and on both sides of our mouths!  What fun :).

 

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Cutting & pasting food photos

We often read the newspaper together, and Henry loves to “read” the flyers.  Since we were practicing with scissors, we cut out food pictures that looked “interesting” (Henry got to choose, and he told me some great stories about why he choose some pictures), then we glued them onto paper.  He started cutting, then I finished when he got tired.  Lots of fun!

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2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 6,200 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 10 years to get that many views.

Click here to see the complete report.

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“You start with a tube…”

It’s been a while since I posted again, but I wanted to pass along a website that I really like.  “You Start With a Tube” is the website of Eric Aadhaar, who passed away this past summer.  He ate through his g-tube due to some complex health issues, and this website is an amalgamation of his learning through personal experience, other people’s stories and research.

What I really like about it is the wide range of topics he discusses… from types of tubes, to making a homemade blended meal… to unclogging tubes.  His learning journey seems very similar to my own, except that he is experiencing things first hand, while I am learning through Henry.

This is always what really attracts me to his writing… his personal observations.  For all my hands-on involvement, I have no idea what it is really like to eat with a g-tube.  I really have no idea what Henry experiences when the food is going into his tummy, or when the pump starts and stops, or when we change his tube.  He is now telling up more about it, and as his language skills develop I expect we’ll hear more and more about what it feels like… but it’s not the same.  So hearing another adult describe the feelings – both physical and emotional – it brings me one step closer to what my little guys experiences.  For this alone, the website is priceless.

Beyond this, it also presents some great information about tube feeding in general, and making homemade blended foods in particular.  For a person new to this area, it would be a great resource to start with.

Cheers, Shelley

http://youstartwithatube.blogspot.ca/search/label/tubes

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Feeding Tube Awareness Week – Day 6

Day 6 Topic:

What do you want clinicians to know about the day-to-day life with a feeding tube?

For today’s topic I’m going to veer slightly off topic and talk about using homemade blended food, instead of just feeding tubes in general.  A few months ago our wonderful dietician asked me about helping her with the creation of hospital resource materials about blenderized diets.  She had some ideas in mind, but wanted to know… what would have made it easier?

What a great place to start!

Easier would have been someone saying… “sure, I know a bit about homemade blenderized diets… but there’s another dietician you should talk to, she can work with you to see if it is the right option for your family”.

That would have been music to my ears! 

Instead I got people telling me all sorts of reasons why it wouldn’t work… reasons that time has shown to be incorrect; given by people who didn’t have enough experience to make that judgement.

I fully understand that not all children can have a fully homemade diet.  Blenderized diets are like a continuum… on the one side – simply adding a bit of baby food fruit or veggies to a commercial formula.  On the other side, fully homemade. And everything in between.  So when someone says “no… it’s not possible”, I don’t believe it.  I don’t believe nothing is possible.  That is when my stubbornness kicks into overdrive.  Tell me I can’t do something and I will almost certainly find a way (after a few tears most likely!).

I’m sure that most people we met along the way were doing the best they could, based on their knowledge, to help us.  But I’m a firm believe that if you don’t know something… just say so!  There’s nothing wrong with admitting to not being an expert – that’s smart!

So for me… I would like clinicians to know that homemade foods:

  • are possible;
  • may be more effort that opening a can of Pediasure, but are definitely do-able;
  • are vastly easier with the proper equipment;
  • are about so much more than just food;
  • can provide parents with the nurturing role that is often missed with commercial formulas;
  • may help to promote oral eating;
  • offer the health benefits of a well rounded diet;
  • may help to reduce reflux and other gastrointestinal discomfort some people experience with commercial formulas and tube feeding;
  • may lead to other health improvements; such as thicker hair, weight gain in kids who don’t gain weight on commercial formulas, more energy, better sleep;
  • are so worth it!

If this list is WAY too long… then I’d love it if clinicians just say… “there’s this person you should talk to… she/he can help you with this decision!”.

 

Cheers, Shelley

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