Henry's Homemade Formula

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

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

Advertisements
Leave a comment »

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

Leave a comment »

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

Leave a comment »

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. 

 

 

Leave a comment »

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

Leave a comment »

A few years later…

Then…

IMG_2086

And now…

 

lifetouch_20171209131404

 

 

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

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

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

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

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

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

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

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

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

Cheers, Shelley

Leave a comment »

Back to the hospital… and a new asthma medication

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

ventolin

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

Nice!

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

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

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

 

Cheers, Shelley

 

 

Leave a comment »

Making a homemade blended diet… on the fly (with baby food!)

Arg… our fridge stopped working!  Upon reflection, it stopped working 2 days earlier, as Shawn had commented that the milk seemed a bit warm.  But I didn’t notice it until Thursday morning when I took the eggs out for breakfast.  Warm… very warm eggs.  Not good…

Because I didn’t notice in time, I ended up having to throw out most of what was in there… including the 3 batches of Henry’s food I’d just made the night before.  Arg…

IMG_1036

So… what do you do with two hungry kids and no food???

IMG_1037

Thank goodness for the emergency stash of baby food!

 

IMG_1038

Thankfully anytime the hand blender is involved, Henry thinks it’s fun!

IMG_1039

I always have a few jars of baby food stashed at the back of the cupboard, just in case.  I never quite knew what the “just in case” would be… but now I do!

If using baby food for a homemade blended diet for a g-tube, the “first steps” or “first foods” type works best.  It is smoother and typically doesn’t need to be blended.  Great if the power goes out!  In this case, I had a few jars of the “first steps” type and a some of the “second stages”.  The second stages were thicker and chunkier so needed to be blended smooth enough to go through Henry’s tube.

I combined the baby food with some rice milk (I always have a few of the non-refrigerated tetra-packs around), then added in some molasses and oil to boost the calories. If I was doing this longer term, I would have also added in some tomato pasta.

It certainly wasn’t the well balanced diet he typically has, nor as calorie dense… but sometimes you just have to make the best with what you have!

I always try to keep a few containers of food frozen for Henry too, and we used this up until I had the chance to blend another batch.  The refrigerator repair person came Thursday evening, and thankfully we are back up and running again.

Cheers, Shelley

Leave a comment »

Funding cuts affect Henry

CFA

Ever since we entered the medical system, I’ve gotten used to advocating on Henry’s behalf.  It’s a “must-do” when your child needs extra support.  But it really sucks when there just isn’t enough money to go around.  I know money doesn’t grow on trees, but sometimes it would sure be nice to have an unlimited supply!

So when I heard about some reduction in services that might affect Henry, I wanted to learn more.  While I have talked with a number of people about this… please know that this is all second- or even third-hand information.  But it’s the best I’ve been able to do to learn more.

 

Henry receives a lot of his support from the BC Centre for Ability – (CFA) including physiotherapy, occupational therapy, and speech & language therapy (although we were recently discharged!), along with funding through the Supported Child Development Program.  And they offer so much more… all depending on what the family needs.  We are so fortunate to be connected with the Centre, and they have played a massive role in our lives over the past 3 years.

So… when I started hearing tidbits of information that the Centre was struggling, laying off support staff, reducing services, reevaluating funding contracts… it goes without saying we were concerned.  From my understanding, the Centre is supported financially through government funding and private donations.  The Centre for Ability Foundation is a registered charity that raises funds for the Centre’s various programs.

From what I have learned, the recent staffing reductions and other cost-saving measures are due to a change in government funding.  Our current provincial government negotiated contracts earlier this year.  However after that last election, the government no longer honoured those contracts.   As a result, the Centre planned operations based on a certain financial status, and now has to make changes due to the shortfall.  Again, this is just what I have learned so far.

 

So… what might these mean for Henry:

  • less frequent support visits from our physiotherapist and occupational theraptist
  • a change to some group visits held at the Centre’s offices, instead of private visits in our home
  • longer wait times for current services and any we might be wait-listed for in the future
  • more onerous, and more frequent, reviews for funding through the Supported Child Development program, which provides additional support at Henry’s preschool
  • Less support visits to the preschool
  • Less selection for therapy toys for both support people and in the lending library.  Toys that are broken not being replaced.

 

For us… these possible changes are all “doable”.  We’re okay, and will adjust.  Packing up the family and shlepping to the CFA  offices is certainly less convenient, and much harder with two kids, but we’ll manage.

But I think back 3 years… and this would have had a major impact on our lives.  It would have been the difference between getting the support we so desperately needed, and possibly giving up and staying home.  By the time we fed Henry (30-60 minutes), waited to see if he would throw up (30 minutes at least), cleaned everything up… we only had about 1.5 hours before we started again.  Plus I was still pumping everytime so Henry could have expressed breastmilk.   And we just weren’t comfortable feeding him outside our home.  It wasn’t that we couldn’t do it… but we were still learning everything and it just seemed more complicated than it was worth.  To have to try to do that every week, possibly more than once per week, in order to attend therapy… well frankly, we just wouldn’t have done it.  At least not as often.

We were lucky.. in the beginning we got to see our therapists about every 2 weeks.  Henry’s development was changing so quickly that we needed to frequent visits to stay focused on what we could do to help him.  And we got the support we needed… and more.  THANK YOU!  Now that Henry is older, we don’t need visits so often and usually see our therapists every 4-8 weeks.

We continue to so appreciate how they go above and beyond to help make our lives easier.  There really aren’t words to express our overwhelming gratitude.  Coming to our home means Henry is in his home environment.  We can work with what we have around us for therapy which makes it easier to consistently implement their suggestions.  And it’s much easier to fit therapy into our lives… versus fitting our lives around therapy.  It may seem like only a slight grammatical change… but anyone who has multiple medical appointments for any reason can relate.  At some point it seems like the appointments are your life and everything else (including just being a kid!) takes a back seat.

 

So… I guess all this rambling on is just my way of saying…

 

THANK YOU CFA!

…and I am sad to think all this might have to change and I am even more sad to think of the families who might not get the support they so desperately need.

 

Shelley

 

 

2 Comments »