Henry's Homemade Formula

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

Toilet Training Update

Peeeeeeeeeeeeeee!

It’s the new call to action in our home :).  Only it’s usually a very quiet peeee… without much fanfare, and unless you’re paying close attention Henry will simply toddle off top the bathroom and expect you to follow.

We got our first potty several months ago but didn’t actually start any “training”.  We were more potty “exploring” – aka… sitting down, standing up, sitting down, standing up… you get the picture.   Henry was excited about it, but the timing wasn’t great what with family visiting for a few weeks, then Christmas holiday, and a few colds sprinkled in throughout.  But we wanted to start the process as Henry was showing lots of signs of being ready to try.  So we kept on playing, ready books and singing songs and waited until the time was better.

At Christmas we visited with family and Henry’s 4 year old cousin was there.  Being fully potty trained, and coolest person ever as far as Henry’s concerned… this was great.  Henry followed his cousin into the bathroom regularly (and being 4, his big cous’ didn’t mind) and by the time we got home Henry wanted to sit on the potty too.

A few weeks ago we started with bath time since it was a predictable daily routine.  Brush teeth, get undressed, sit on the potty, into the bathtub.  It didn’t matter whether he actually peed or not… it was just cool to try.  It was part of the routine and he seemed to adapt really well.  Then last weekend when he decided he didn’t want to wear a diaper anymore (or any other clothes for that matter!), we decided to let him and try it out.

A wonderful friend of ours passed along some advice… just go for it!  Get rid of the diaper, expect a mess and have fun.  She also used cloth diapers and found that trying to potty train while still in diapers didn’t work – cloth diaper babes are used to feeling wet, that’s the norm.  So in order to get the feedback needed to understand when it’s time to pee, the diaper had to go.

Just like she predicted… lots of accidents the first day (thank gosh for no carpet!) but by about the third day he was peeing on the toilet almost all day. Turns out he doesn’t like his little potty – he’s too into daddy right now for that – has to be on the big toilet like him. So we got the First Years reducer ring.  No particular reason for choosing this one… it has a bit of padding which I though he might like, little handles on the sides that he holds onto when sitting on it and carrying it around.  Plus it wasn’t too expensive (about $13 or so) and didn’t have anything fancy.  I’m not into branding everything single thing in the house, so didn’t want Disney characters, or Cars, or Sponge Bob… it’s a potty after all!

Turns out he loves it!  Carries it around with him all day from room to room! Still a few accidents, but for the most part between us asking him and he either saying “peeeeeeeee” or pulling on our clothes, we make it to the bathroom on time.

I don’t see Henry getting out of his diapers at night for a while; nor while we’re out of the house. At home it’s going really well – but he often needs to pee every 15 minutes after he’s eaten!  I could have sworn his diaper used to stay dry for an hour or more before.   I’m not sure if this is typical..

  • is he just excited?
  • is it because it’s new?
  • is it because of his lower tone that he just can’t “keep it in” any longer.

Oh well… we’re into a good system right now – diaper at night and when we’re out, no diaper at home.

Cheers, Shelley

 

Advertisements
Leave a comment »

Henry chewed a cracker!

I love fishy crackers!

Ok, not quite.  Personally I don’t find these “baked, not fried” little crackers all that pleasing, but that is sooooo not the point!  Seemingly every playgroup Henry & I attend serve them at snack time, which means Henry’s has repeated exposure to them and watching other kids gobble them up.

And then it happened…

Last week, while I was getting some water for him I noticed out of the corner of my eye that he put one in his mouth.  Not just up to his lips like he usually does, but completely into his mouth!

I froze & watched… not wanting to interrupt in any way… ready in case he choked… jumping up & down with glee (on the inside only!)… willing him not to freak out…

and then…

he chewed!  He actually chewed the cracker!  I know someone out there has stumbled across this post and is wondering what the big deal is, but Henry has never before put anything in his mouth and actually chewed it!  This is amazing!  HUGE!!!

and it gets better – he kept on chewing it!  Even when I (casually) sat down on the floor beside him, he kept on chewing he cracker.  Small pieces kept falling out – more like streaming out in a river of drool – but there was still enough in there for him to appreciate the flavour, the change in texture as the cracker dissolved, the feeling of it against his tongue and cheeks… and he didn’t cough or choke once!

The river of drool is normal for Henry – it’s his bodies defense mechanism for whenever anything enters his mouth.  Our little guy could soak a shirt in under 5 minutes when necessary!

Let’s recap:  food went in willingly… stayed in willingly… crewing occurred… no coughing…

 

YIPPEE!

 

Cheers, Shelley

1 Comment »

A broken feeding pump… and a lifetime warranty!

Uh huh…

That was all I could think of looking at the broken lid of the pump and wondering what in the world I was going to do.  We’d noticed for the past couple of days that we’d been getting an increase in error messages again, but for no apparent reason.  The food seemed fine; the bag seemed fine; the pump was clean… but still they continued.

The only thing different was that the pump’s lid seemed a bit looser than normal, but we couldn’t see why.  Then we noticed it… the small hairline crack along the edge of the clasp – making it so that the lid didn’t close as tightly as normal.

So… I called the Maquet-Dynamed service department – they are the Canadian distributor for the ZEVEX Infinity pump that we use.  I’ve dealt with the service department before and always had good experiences, and this time was the same.  They are professional, and really know the equipment well.

Seems the lids on the pumps must break easier than the other components because the company offers a lifetime warranty on lid replacement.  After confirming our serial number, they arranged to ship out another lid – completely free of charge – and it arrived a couple of days later.  They could have shipped it overnight if it was an emergency, but for us it wasn’t.

In the meantime, we learned that if we held down the lid ourselves, the pump worked just fine.

I think what might have happened was that we had family visiting the weeks prior and another person was learning how to use the pump.  I think perhaps she pushed on the clasp harder than necessary, and thus it cracked.

So… yes, the marketing is correct… the pump can apparently be dropped from 5 feet up (we’ve tested it from about 3 feet when it went flying off the counter!), but the lid is definitely the weakest link!

Cheers, Shelley

 

 

 

 

1 Comment »

Henry eats a very healthy diet for an almost 2 year old boy! (A 10kg little boy!)

I love it when my instincts are confirmed.  It’s not like I didn’t already know this… I make his food almost everyday.  But it’s still wonderful to hear.  And given that Henry is our first child, so I’ve never actually fed a typical oral-eating toddler… then again, most typically oral-eating toddlers don’t eat brussel sprouts! (or do they???)

Anyways, this wonderful praise comes from Ali, our dietician. She’s always looking out for us and reviews Henry’s meals to see if there’s anything we might be missing.   Last November I sent her a 4-day sample of Henry’s menus, and she imputed the menus into her fancy computer program… and voila – Henry eats better than lots of almost 2-year-old kids out there!

I guess it helps that, so far anyways, I haven’t blended up a McDonald’s hamburger & fries… at least not yet!

What we got back was a one-page breakdown, per menu, of the nutritional value.  And just as expected, some days a couple of things were a little low and other days a little high… but all in all – life is good!    The major “ah ha” moment was to do with sodium, which we have already addressed by adding some table salt from now on.

What I love in particular is that written right in the summary it says that in order to optimize Henry’s nutrition, different foods are offered from each food category each day.  Aka… no Pediasure, and it’s still ok.  I’m not saying that Pediasure is evil… for some kids and some families it may be their best option.  But it’s not the ONLY option.  And that’s what I love.   Yippee for us!

To add to our jubilation… Shawn weighed Henry last week before his bath and he was an even 10 kg!  Yippee again!!!

On the growth chart we use – the WHO Growth Charts for Canada – that places Henry right in the middle of the 3rd and 15th percentiles – exactly where he was during his first year of life when he ate exclusively expressed breastmilk.  (Those of you who know Shawn & I personally know that Henry was never destined to be an NFL linebacker!).  Plus his growth for the past 6 months or so has been a beautiful curve.

Ali is still recommending adding more grains and meat or alternatives in the future, just to ensure his diet continues to provide the nutrition he needs as he grows, but for right now… we’re happy as we are. 

Cheers, Shelley

 

 

 

Leave a comment »

Our Mealtime Philosophy

Shawn & I have been thinking again lately about what a mealtime should “look” like to us.  This seems to come up most often when we’ve been out visiting friends or family, or out for dinner at a restaurant.  However… days I’m tired it comes up too!

We’re pretty happy with what we’ve accomplished as a family so far.  We eat dinner together pretty much every day; sometimes breakfast and lunch too.  Henry virtually never eats alone, there’s always one of us with him, even for snacks (yes, we really do eat every 3 hours!).  Henry’s oral motor skills are vastly improving… his gag reflex is farther back than before; he’s drinking water on his own; and will put his spoon & fork in his mouth on his own sometimes.  He’s open to trying lots of different flavours, and will touch his spoon to his lips to taste new things.

But… let’s face it – we’re not a typical family when it comes to mealtime.  And we delude ourselves that we are until faced with the harsh reality of dining with others.  Ok… perhaps this is a bit melodramatic… but how many families have you seen having a floor picnic at White Spot?!?  At home, it’s fine for us to eat meals on the kitchen floor… Henry often does better like that.  It’s fine for us to have him on our laps at the table, and it’s even fine to bring a toy to the table and use it to eat with (once it’s been washed).  We encourage touching food, even if you’re not going to eat it.  Blowing bubbles is celebrated and milk should be tried using every cup at the table… just in case it tastes different from mama’s cup than it does from daddy’s or Henry’s.

I know… there are families out there who might think we’re nuts.  That’s ok.

But, even with this positive spin on our atypical family mealtime… there are still times it all gets to me.   I just want to eat in peace; with no ones hands in my food; no one trying to “help” me eat; and no one pouring water from their cup to their bowl and back again 10,000 times… each time spilling a little more on the floor!

So… to help us stay firm in our mealtime philosophy, Shawn & I spent some time writing down what we wanted our family mealtimes to look like.  Here’s what we came up with…

Meal time are…

  • a time to be together
  • not rushed
  • everyone participating
  • comfortable
  • a time to explore

At our mealtimes it’s ok to…

  • spit out food (currently on your plate; down the road into a separate cup)
  • touch food
  • sit where we are comfortable; as long as it doesn’t make someone else uncomfortable
  • choose how much we want to eat; and whether to eat

At out mealtimes it’s not ok to…

  • throw things on the floor while at the table, including food, spoons, forks, plates or bowls
  • bang on the table
  • walk away
  • force someone to eat or drink

These points are now posted on our fridge to remind us all of our mealtime commitments.  And so far it’s helped.  It’s not perfect and we just today we had another conversation about whether something was ok or not.

But, when I get tired of sitting on the floor, I helps remind me that sometimes it’s good to be down there, but it’s also ok to say no… this time I’d like to eat at the table.  For us, it’s the journey, not the destination.  If you join us for a meal, we don’t care if or how or how much you eat… as long as you participate in our journey.

So if you stop by and see us all sitting on the kitchen floor for breakfast… pull up a cushion and join us!

Cheers, Shelley

Leave a comment »

Sodium & Iodine

With all the calculating and measuring we did to build a healthy diet for Henry, never once did I think about needing to add additional salt to his menu.  With so much emphasis on reducing salt in our diets, I just assumed he would be getting enough.  So when Ali, our dietician, mentioned last month that she wanted to talk about salt, I was very surprised.

As it turns out, what she had to say makes a lot of sense.  The majority of our salt comes from processed foods – which I knew – so given that Henry eats very little processed foods, his salt intake may be low.  But here’s where it gets “tricky” (her words, not mine)… there is no Recommended Dietary Allowance for sodium – so determining how much Henry might need is an educated guess.  I’m very used to this… in my books almost everything that happens in the medical field is an educated guess, and remembering this helps me out in hard times.

As a result of not having a Recommended Dietary Allowance (RDA) for sodium, the next best thing is the “adequate intake value” (AI).  From what I can tell searching online, the different between an RDA and an AI is the method used to establish the amounts.  RDA are based on scientific research methods while AI are based on observations, etc.

In most typical North American diets, nearly 75% of sodium that is consumed is from processed foods.  While meats products and vegetables do contain some sodium, it tends to make up only about 10% of the sodium a person actually needs.  Table salts added while cooking and eating tends to account for about 15%.

So… while I was surprised to hear that Henry’s menu might need added sodium, it makes perfect sense.  He eats meats and veggies – and gets some sodium there, he eats almost no processed foods… so his diet may very well be lacking.  While we think of sodium as a “bad” thing… it is actually very important for lots of bodily functions such as regulating blood pressure, blood volume, and neuron regulation.

For a person Henry’s age the AI for sodium is 1000mg/day.  Based on the sample menus I sent Ali, she figures Henry’s “average” daily sodium intake is about 350mg/day.  As a result she recommends adding 1/4 tsp of table salt, thereby giving him an additional 575mg of sodium/day.

 

Just to make things even more fun… table salt also contains iodine.  So by adding 1/4 tsp sodium to Henry’s menu, we’re also 95 mcg of Iodine per day.  The RDA for iodine for a person’s Henry’s age is 90 mcg/day.  The body does need a small amount of iodine as it is an important mineral for thyroid health.

 

 

So… following Ali’s recommendations we are now including 1/4 tsp table salt in Henry’s daily menus. Currently when I prepare his food, I typically don’t use meat or veggy broths, although I do occasionally include the same meat that Shawn & I are eating which may have some type of sauce with it.  If I start increasing the amount of processed foods in Henry’s diet, then we will likely do a urine test to confirm his sodium levels (urine tests are the most “sensitive” way to determine sodium levels).   But I figure Henry will have lots of opportunity in the future to eat junk food – I don’t need to help him start now!

Cheers, Shelley


1 Comment »

My article is now available online

The article I wrote for the Toastmasters Magazine is now available online for non-TM members.  Click here to see it.  I’ve been getting a lot of feedback to it, which is just so exciting!  I find it awe-inspiring that someone as close to home as Delta and as far away Qatar and China has taken the time to write me.  Thank you so much!

Here is a selection of comments I’ve received so far:

 

Hi Shelley,

I saw your workshop at the convention in November and have been looking forward to reading your article about Henry. My Toastmasters magazine has just arrived and I read it right away… what a wonderfully uplifting piece! I will certainly add your blog to my list to follow. I felt compelled to forward another blog to you that I have been following for a while. It’s always very moving reading Cherie’s words and, like your story, it is very inspirational and yes, sometimes heartbreaking… but I just know you will relate to what she has to say.

Sweet Charlie-Anne o Mine

Keep strong!”

– Lorna

 

“Dear MTM Shelly,

Let me congratulate you first for writing a heart touching article in the December issue.  I am TM Rayhan from Qatar Toastmaster club. I am really impressed by going through your article. It’s really motivational and has greatly inspired me. How is your son now?
Once again thank you from the core of my heart for your article.Convey my regards to your dearest husband.”

– Rayhan, Qatar

 

“Dear Shelley,

I read your article “For the sake of my Son” in Toastmaster Magazine, December 2011 issue and found the topic interesting. Thanks for the insight.”

– Goran

 

Dear Shelley,

Congratulations! It’s great to see your submission published in the TM magazine. Thanks so much for sharing your personal story. Henry looks so adorable in the family photo.

You are an inspiration and thanks for sharing!

Warmly,

Reamick Lo

District Governor, District 21

 

Hi Shelley,

I just read Toastmasters magazine December issue.  I was just moved by your story and by your little Henry. Thanks for bringing us so a moving story. I’m also a Toastmaster from China. I just got my CC award. I have a baby girl who was born December 2010, just 10 months younger than your Henry. I feel like it’s Toastmasters that connect us together.

Just want to say best wishes to your Henry and your family.

-Simon

Leave a comment »

Is Santa Real???

This one has absolutely nothing to do with g-tubes, muscle development or anything else medical… but boy is it sure a great story!

 

The Truth About Santa

A few months back, the Tooth Fairy got busted. She left a note for Alice up on her computer, and Lucy figured the whole business out. The Tooth Fairy cursed her need to write notes in elaborate fonts and tried to come up with a cover story, but it didn’t fool Lucy.

To her credit, Lucy has kept the secret from her little sister, who still hasn’t lost a tooth and deserves to wake up with money under her pillow.

But the Tooth Fairy knew it couldn’t be too long before Santa was similarly unmasked. She didn’t know when or how, but she knew the days of magic in her house, at least magic of a certain sort, were coming to an end.

And the Tooth Fairy—by which I mean myself—was pretty darned sad about the inevitable, which finally arrived last week.

Christmas magic

Lucy and I have been exchanging notes since the school year started. We’ve talked about all sorts of things—sports, books we’d like to read, adventures we’d like to have, even stories from when I was in third grade. For the most part, though, it’s been light, casual stuff. Until last week.

I NEED TO KNOW, she wrote, using capital letters for emphasis. ARE YOU SANTA? TELL ME THE TRUTH.

What do you do when your kid asks for the truth? You tell it, of course, doing your best to figure out a way that keeps at least some of the magic intact.

Here’s what I wrote:


Dear Lucy,

Thank you for your letter. You asked a very good question: “Are you Santa?”

I know you’ve wanted the answer to this question for a long time, and I’ve had to give it careful thought to know just what to say.

The answer is no. I am not Santa. There is no one Santa.

I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my mom did for me, and the same way her mom did for her. (And yes, Daddy helps, too.)

I imagine you will someday do this for your children, and I know you will love seeing them run down the stairs on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.

This won’t make you Santa, though.

Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He teaches children how to have belief in something they can’t see or touch.

It’s a big job, and it’s an important one. Throughout your life, you will need this capacity to believe: in yourself, in your friends, in your talents and in your family. You’ll also need to believe in things you can’t measure or even hold in your hand. Here, I am talking about love, that great power that will light your life from the inside out, even during its darkest, coldest moments.

Santa is a teacher, and I have been his student, and now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he’s filled with joy.

With full hearts, people like Daddy and me take our turns helping Santa do a job that would otherwise be impossible.

So, no. I am not Santa. Santa is love and magic and hope and happiness. I’m on his team, and now you are, too.

I love you and I always will.

Mama

 

Source: http://www.cozi.com/live-simply/truth-about-santa

2 Comments »

Happy Holidays! my thoughts on the past year & the year to come…

Happy Holidays!

I’ve haven’t been online for the past few weeks as we enjoyed our 2nd Annual “Appointment-Free December”!  Shawn & I started this last year, as we were feeling completely overwhelmed by all that was happening around us.  We felt so good about the experience that we did it again this year.  It takes a bit of planning (what in life doesn’t!), but we endevour to have an entire month with no medical appointments.    We are so blessed with all the support that surrounds us, but at some point we need to unplug, turn off the phone, and enjoy time just being us.  This time one little pediatrician’s appointment snuck into the first week of December, but other than that… we were home free.  As a result, we had a lovely time visiting with friends and traveling to my Dad & Gail’s home for Christmas.

This past month has also given us some time to reflect on all that has happened and all that will be happening.  When we thought back to December 2010 we were astounded at all that had changed.  Henry has achieved almost all of his age-appropriate milestones.  He set his own pace and worked harder than I’ve seen anyone before… all the while laughing and singing (Wheels on the Bus, of course!).   Shawn & I learned (and continue to learn) that our job is to provide the support Henry needs, but we must also let him achieve his goals his way, in his own time.

Each year we write a Christmas letter which is sent to our friends & family.  Actually, Shawn & I have a deal… he writes the letter, and I do the photocopying, address the envelopes and write the cards.  When I was thinking of my “work” for last year, learning to make Henry’s homemade food ranking near the top of the list.  It has been a challenge like none other, and tested me in ways that no typical job ever could.

I would love to say that making Henry homemade blended food is as easy as using commercial formula, but clearly it is not.  It takes more organization, more time, more money (at least in our case, with our funding sources), more talent, more dedication, more stubbornness, and waaaaay more patience.

I continue to use the terms…

  • “Homemade Blended Formula”: the term coined by Marsha Klein Dunn, author of the Homemade Blended Formula Handbook; and
  • “Blenderized” food: the term used by many of the hospital personnel we meet with

…however I really dislike them both.   The term “formula” connotats either infant formula or some scientific equation involving copious amounts of math.  To me there is no magic formula… it’s just food.  The same as mommy and daddy eat – Henry eats food too.  He just happens to eat food in two ways – table food using his spoon and (new) fork (which he loves!) and tube food from his food bag.

And yet, the term “blenderized” food seems lacking… it skims over the magnitude of time and dedication people spend caring for their child who eats through a g-tube.  I find I have often combined them together… homemade blenderized food… somehow that feels better to me.

This seemingly simple discussion of terms summarizes another thread that has been mulling around in my mind for a while – the importance of vocabulary.  This is not the first time it’s come up (click here for a previous post)… but it is again swirling around in my mind.  As we attempt to “normalize” our mealtimes, I still struggle to find age-appropriate terms for Henry’s eating.

I search for words that focus on the meal, not the medical; the person, not to technology; the food, not the formula.  I search for these words not just for our little family of 3, but for our extended family, for our friends, and for the random people we meet as part of our lives who ask about Henry’s tube.  I still haven’t quite found a way to explain in simple terms what it is that we do.  For me, Henry eats. He eats with his tube the same as we eat with our mouths.  But for others… people who don’t have all the background knowledge, that explanation seems to be lacking.  I’ll continue searching…

Coming up for us… we have our annual “Team Meeting” with Andrea, Amina & Shannon (our therapists from the Centre for Ability) and Krista (our Infant Development Consultant) at the end of January (click here to learn more about these people).  Shawn & I have been thinking a lot about where we’ve come from and what we would like to focus on for the next 6-12 months.  It seems a daunting task, when in fact I don’t think it should be.  It’s just life… and it all happens in it’s own time. Henry is doing so well that part of me wants to just leave it alone.  But he still has hypotonia and this means he still struggles at times.  And these ladies are such a source of support, inspiration, cheer leading, advice, and smiles… I can’t imagine not having them in our lives.

For now… we just keep going day by day, as each new day brings new challenges and triumphs.  Over Christmas, Henry started saying a few words.  He’s up to about 12 one-syllable words, and lots more signs too.  He goes pee on the toilet before bath time now and revels in flushing afterwards.  He tolerates us brushing his teeth, and loves the mint flavour of the flossing picks.

He’s strong willed and defiant; cute and cuddly.  Loves giving kisses and high fives. Puts himself in time out instead of picking up his spoon he threw on the floor.   Last night, he decided to wake up hungry at 3 am, and then wanted to play until 5:30am.  So now it’s 11:00am and he’s just waking up.  Must be time for me to wrap up :).

Cheers, Shelley

Leave a comment »