Henry's Homemade Formula

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

Feeding Tube Awareness Week 2018: Fired Up About Nutrition!

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

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

 

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

Cheers, Shelley3561567_orig

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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

 

 

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