Henry's Homemade Formula

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

Lessons Learned… foods that are hard to blend

For this “Lessons Learned” I thought I’d focus on what I’ve learned about how different foods blend together in Henry’s homemade blended food.  With the Vitamix blender, just about anything can be added in, but some foods are still harder to blend than others.

 

Blueberries: super good for you, but can’t be blended for the life of me.  Those pesky little seeds keep clogging this feed pump no matter how long I blend for.  I’ve tried other berries (raspberries, blackberries and strawberries) and they work fine… it’s just those stubborn blueberries.

 

 

 

White rice: too sticky!  Even blended with other foods, the rice coats the tubing and makes it hard for the pump to push it through.  Brown rice is fine, its dense enough that blends better.

 

 

 

Grapes: made the mistake of buying seeded grapes once – what a nightmare!  A whole day of error messages from the pump because the seeds were small enough to get through the feeding pump, but they got jammed in his button instead.  Oddly enough, even with seedless grapes, I can blend them with other foods no problem, but when I tried to puree just grapes, the skins wouldn’t breakdown and the final product was very lumpy.  Henry loves the taste of grapes, but we have to be very careful he doesn’t choke on the skins.

 

 

Bananas, Oatmeal and Yams: individually they are wonderful, in combination the food was so thick I could have used it for cement!  I ended up having to add so much milk to thin it down that I ended up with two days worth of food.  Too much volume!

 

 

 

Prunes & Raisins: prune juice – great!  dried prunes – not great!  They remain too chunky and regardless of how long I blended I could see little chunks floating around in the blender.  Raisins work mildly better, but still found them hard to blend.  If I put them in the blender first, so they were right near the blades, then it is usually okay.

 

 

 

Celery: too stringy!

 

 

 

Soy Milk: this one surprised me.  I don’t use it very often, and I think Henry’s having a hard time digesting it, so I’ve stopped altogether.  But the times I have used a full cup of soy milk, the final blended liquid turned into a mousse-like consistency.

 

 

 

 

 

These are all the examples I can think of for now.  As I come across new foods which I find  don’t blend well I will keep adding to the list.

Cheers, Shelley

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One-handed walking

Henry has been loving the freedom of walking with his little walker, and we’ve been going for walks around the block more and more.  We tend to go shorter distances now, only because he’s so interested in every light pole and bus stop that it takes forever to get anywhere!

Lately he has been experimenting with balancing “no-hands” and seeing how long he can stay up for… up to minute or more this morning!  And, to add to the excitement, he is now walking holding onto only one of our hands.  Anyone who’s been around toddlers a lot  knows that one-handed walking is a major accomplishment and demonstrates a great improvement in balance, coordination, and core strength.  We went for a walk this morning and I spent most of the time pushing an empty stroller.  Albeit, the pace is certainly slower (so much for my exercise!), but the grin on his face was definitely worth it!

Yippee for us 🙂

 

Cheers, Shelley

 

 

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No juice please

I have a dilemma…

Henry & I have been attending our local Strong Start program, at the nearby elementary school.  Strong Start is a program through the BC Government offering play-based, drop in programs for kids aged birth-5 years. We met Beth, the facilitator, last spring when we first moved into our new home as she also facilitated a babies & rhymes class we went to.  Beth is such a lovely and lively person and Henry just adores her.  The Strong program is offered mornings from 9am-noon and we usually head over for a portion of the morning at least a couple of times a week.  It’s a great program and we love it!

As part of the morning, Beth offers a healthy snack.  The foods change daily and she asks that families bring a bottle or sippy cup for the kids, or use the water fountain in the hall.  So when we were there for the second time I knew it would be snack time after the gym and didn’t think much of it.  Henry & I had just arrived during gym time and were playing on the mat while the other kids had snack.  But it was Beth’s announcement during snack time… “milk or water only please… no juice” that got me thinking…

Hmm…

Seems perfectly reasonable, and the last thing anyone wants is a room full of toddlers hyped up on sugary juices or pop!

But what about Henry?

Between meals we will usually have a drink of juice.  Since Henry doesn’t eat “snacks” like the other kids do, he drinks juice in order to get a few extra calories and keep his energy up.  Milk is just a little bit thicker and it’s harder to push through his syringe when we’re out.  Plus it needs to be cleaned up immediately afterwards or it smells horrible.  Water is just fine, but we usually give him part juice and part water.

Beth knows about Henry’s g-tube, and is fine with me feeding him while there (of course).  But when I mentioned he usually has juice, she didn’t say no, but jokingly asked if there was anyway he could go on a “diet” while at the centre.

So far we’ve only attended for an hour or so at a time, so I haven’t given him anything to drink.  But as the rains come, the weather gets gloomier, and it’s harder to be outside, we will likely spend longer periods of time there each morning.  At this point, I would like to start giving him juice.

 

So what do I do…?

I don’t want to knowingly break the rules… I don’t want Henry to think that he can knowingly break the rules… but sometimes rules aren’t appropriate for everyone.

 

So what do I do…?

I guess it’s one of the those bridges that we cross when we get to them.  I’m sure I’m making a mountain out of a mole hill.  Such is my lovely anxiety-riddled brain :).

 

So for now… no juice please (except for Henry).

 

 

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Canning a Homemade Blended Formula

As promised in my earlier post about our summer vacation, I’ve learned more about canning a homemade blended formula, and made my first (and apparently last!) attempt.

As it turns out… you cannot can a homemade formula.  Now if only I’d done a bit more research BEFORE I tried it… but my mind doesn’t always work that way :).  So off I went one afternoon – all eager to put my newly acquired home preserving skills to good use.  I’d chatted with my mom & step-mom and gleaned all the canning advice they could pass along. My mom-in-law happily passed along all her canning equipment (anything to get it out of storage!) and my other step-mom passed along some jars she’s collected… so I was all set.   After making a few batches of jams, pickles and canned peaches, I decided it was time to give a shot at canning Henry’s food.

I had everything organized (of course!), measured and blended his food, poured it into the hot, sterilized jars and returned them to the canner (I have a water-bath canner, not a pressure canner).  Because everything in the food is already cooked, I figured a processing time of about 10 minutes should be sufficient to get a proper seal (10 minutes is what jams usually take).  Set the timer and I figured I was laughing :).

Note to self… too confident!  Research BEFORE action is sooooo much more appropriate

When the processing time was done I removed the jars, let them cool 24 hours, and tested the seal – all good!  There were more air bubbles than I would have liked, but his food is so thick and it blends for so long, it’s nearly impossible to remove them all.  I did some reading online afterwards that said air bubbles aren’t that bad… best to try to remove them but with thicker liquids like apple sauce, it’s impossible to get them all out.  So… other than a few air bubbles… I was still laughing :).

Then I thought I’d better do more reading… (good thing!) 

I remembered reading somewhere about the different uses of water-bath vs. pressure cookers. And there it was… water-bath canners can only be used for acid foods… things like jams, jellies, salsas, pickles, tomato sauces.   It can only be used for foods with a ph of 4.6 or lower.   This is necessary to control botulinum bacteria.  Acidic foods contain enough acid to block their growth, or destroy them more rapidly when heated. The term “pH” is a measure of acidity; the lower its value, the more acid the food. The acidity level in foods can be increased by adding lemon juice, citric acid, or vinegar (as with pickles).

A water-bath canner CANNOT be used for most veggies, meats, seafood, poultry, dairy, eggs, etc… all the ingredients in Henry’s food!  These low-acid foods have pH values higher than 4.6 up to 6.9. (non-acidic, or alkaline foods have pH values of 7.0 or greater).  With these foods, unless temperatures of 240° to 250° F, attainable with pressure canners operated at 10 to 15 PSIG
(PSIG means “pounds per square inch of pressure as measured by gauge”), the botulinum bacteria is not killed and the foods are unsafe to eat.  Meaning… if I’d fed this to Henry – he could have gotten VERY, VERY, VERY sick!

See what I mean… way too confident!

So… I promptly threw away the 5 jars of food I’d made the day before and considered it a “lesson learned”.  Just out of curiosity, I tested the ph of Henry’s foods before throwing one of the jars away (we still have some ph strips from when Henry had his ng-tube).  His food has a ph of between 5-6… good thing I did some extra reading!

So… until I’m brave enough to learn how to use a pressure-cooker (which frankly scares me… but mostly because mom doesn’t like them and I’ve been indoctrinated!), I guess it’s back to the freezer :).

Cheers, Shelley

 

 

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My current dilemma… table manners vs. oral eating

This is what’s rooting around in the back of my mind right now… which is more important – table manners or encouraging oral eating?

For some people, both goals may be fine… but for us, they are currently mutually exclusive.  You see, Henry eats barely anything by mouth.  On a good day, he may take a couple of sips of water and place some puree or other food up to his lips to “taste” it.  Virtually nothing actually goes into his mouth, and if it does he drools it out immediately.  Drooling is an automatic reflex for him now – it ensures no food actually stays in his mouth, thereby protecting himself from choking.  And when needed, he produces a massive amount of saliva – food doesn’t stand a chance!

He has no psychological need to eat by mouth.  For as long as he remembers, he has eaten through his tube – that’s how it’s done. He copies Shawn & I and pretend eats, but thinks it’s a game, not for any substantial bodily need.   Working with Amina, our Occupational Therapist, we encourage Henry to explore foods with his hands, body, mouth, spoons, forks, cups, straws, toys… anything  he might feel comfortable with.  For us, food is for touching, rubbing on toys, “smooshing”, blowing bubbles in, tasting, licking… anything that keeps the experience positive.

His latest fun thing is helping Shawn and I eat.  When he’s done sitting in his chair, he sits on our lap and helps us eat by placing the food from our plates onto our fork.  This is one step up from his other favourite mealtime activity of placing food directly into our mouths with his hands.

All of this is in effort to encourage a positive experience with food.  We’ve had our share of ups and downs with this.  When we first introduced baby cereals when he was about 5 months old, he loved it!  Gobbled it up, if you can believe it.  We couldn’t have been happier.  After 5 months of unsuccessful breast, bottle and cup feeding, it seemed like we finally had a plausible alternative.  Unfortunately we didn’t know enough about what Henry could and couldn’t do… and after about 1 week he flatly refused all food.

Game Over… period.

We now know that the quiet coughing we heard was actually him continually choking on the food, unable to swallow strongly enough to get it down, and then breathing in the fluid that was left in his throat.  No wonder he stopped eating.  We’ve been on an eating roller coaster ever since… sometimes he will drink, sometimes he won’t.  Sometimes he’ll eat purees, sometimes he won’t.

At times he has refused all foods – for up to several weeks at a time.  Usually this is precipitated by his choking on something, but others times we don’t know of a definite cause.  I tend to go a little looney at these times… but it’s happened often enough now that I know he’ll eventually try foods again.   At times he will refuse to even sit in his chair – for a kid with low muscles tone he can sure arch his back in defiance!  These times he’ll join us at the table by sitting on our lap or standing beside our chair.

Family meal time is VERY important to us, so we eat together any way we can… even if that means we all have a picnic on the grass, or sit on the floor in the living room.  It doesn’t matter how we eat… as long as we’re together.

But this brings me back to my current dilemma… table manners vs. encouraging oral eating?

There are some things in life that I used to take for granted…

  1. no throwing food on the floor (once old enough to know better)
  2. no eating foods off other people’s plate
  3. other than the “at home 5 second rule”, no eating food off the floor
  4. toys are for playing, food is for eating

In the past 18 months, we’ve not only broken every rule… but often encouraged it!

So… here’s my rhetorical questions…

When Henry throws things on the floor – how do we respond? We don’t want him to throw his foods, spoons, etc on the floor.  We tell him not to.  Once he’s done in his chair we ask him to pick them up and give them to us.  But… do we do more?

  • When my nephew (now 3 1/2 years old) threw things on the floor, his parents would make him get out of his high chair and pick them up.  Then, since he was out of his chair, mealtime was over (much to his displeasure).  But my nephew is and always has been a great eater.  He wants in his chair; he wants to eat… so having mealtime end early was enough of a consequence to eventually break the throwing habit.
    • But Henry doesn’t want to eat.  He sees no need.  So taking him out of his chair early has no negative consequences.  We continue his “tube” meals even when he’s out of his chair… right now weight gain is more important.
    • We tried “time outs” when he threw – but he quickly formed a negative association with eating and started refusing to sit in his chair.  So time outs promptly ended, at least in this context.
    • He is slowly starting to throw less. Or we’re better ant noticing the signs and encouraging his to “pass it to mama” instead.  Either way… it’s improving :).

What about “helping” us eat off our plates, by placing foods either on our forks or in our mouths?

  • At home I don’t mind, so far.  It gets Henry involved at mealtime and touching the food.  He will sometimes lick his fingers afterwards, which means he getting some flavours.  Plus, he’s learning all the different foods – what the smell, feel and look like. All important things for us.
  • But I have to admit, we were out for dinner the other night at Whitespot.  We were outside on the balcony and there was only one other couple there, who were both happy smiling and waving to Henry.  They even suggested closing the patio door, so he could crawl around while we ate – very nice people.  But part way through the meal, Henry sat on Shawn’s lap and wanted to put food on his fork.  I felt uncomfortable.  Suddenly what I thought I was ok with… I wasn’t anymore.  There were different rules when out, and this was one of those times.  So Henry went back to crawling around and didn’t help Shawn eat.  Part of me is ok with this… but part of me wishes I’d been fine with letting him “help” Shawn eat, so that he could have experienced to restaurant meal too.

We were at a 1st birthday party for a friend of ours son a few weeks ago.  There were about 8 kids there of various ages, mostly cousins of the birthday boy.  One of the activities was cupcake decorating (great fun – wonderful idea for parties!) which Shawn & Henry did together.  Needless to say, right from the start they were both covered in icing… we thought it was great!  And Henry even started putting his fingers in his mouth and tasting the icing – we were thrilled!  He kept smearing it around on top of the cupcake and then licking his fingers.  Some parents might caution their child to not eat too much, but we were the opposite – go for it :).

  • A background… the other kids were the cleanest,quietest, calmest kids I have ever seen at a party.  No yelling, no grabbing dessert toppings… they didn’t even eat the cupcakes when they were finished decorating!  As a result, Henry stood out immediately.  And so did we for encouraging the mess.  Other parents kept offering us paper towel and water to clean up with.  We politely declined 🙂
  • We’re ok with getting completely covered with food. I have to keep reminding myself, its not “dirty” it’s food.  Food isn’t dirty – it might be messy, but not dirty.

At this same party, I was watching the mom feed her 1-year-old little boy. I have admit… I’m a bit of a voyeur.  Not in a lewd, peeping tom kind of way… more in a “curious, I missed out on it” way.  When ever I see kids eating – whether it be breast, bottle, cup or finger feeding, I find myself drawn in and watching.  I don’t mean to be rude – but I never got those experiences with Henry and I think this makes me curious.  Anyways, Mom was feeding her little one and he kept trying to touch her with the spoon.  It was all very cute, except mom’s reaction (to me anyways).  She kept saying, “Ew…yucky… don’t touch me with that…”.  And she meant it… she didn’t want his food anywhere on her.  I was horrified!  We would never say food is yucky.  And yet, for her… and he “good eater” son, this was normal.  I recall my sister-in-law did that for a time too.  I never thought anything of it, until now.  When you have a child who eats well, it probably doesn’t cross your mind.

Anyways, all this rambling somehow leads back to my initial dilemma… which is more important – table manners or encouraging oral eating.  I mentioned this to Shawn a few nights ago, and so far we both agree that we’re ok with the mess, the “help” and the occasional throwing.  We would much rather have an ill-mannered child who eats by mouth, than a perfectly mannered prince who is scared of food.

Cheers, Shelley

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High Calorie Veggies

I got an email back from Ali, our dietician,  in follow-up to Henry’s flu.  We’d been chatting about lots of things, including Henry’s weight gain, and she offered this:

“I am so pleased to hear that he is tolerating a higher volume of nutrition and has good energy! It is really encouraging that he was
able to gain some weight! 
 

Have you tried avocado with Henry yet? Avocado is high in calories and healthy fats. Also it is good for Henry to get a range of different
fruits in vegetables in his diet for variety of micronutrients but as a rule of thumb vegetables that grow underground are often higher in calories. Here is a short list of some higher calorie vegetables…”

Higher Calorie Vegetables

Lower Calorie Vegetables
Peas Green and Yellow Beans
Sweet Potatoes Broccoli
Carrots Cabbage
Corn Turnip
Parsnips Eggplant
Squash Mushrooms
Potatoes Tomatoes, Lettuce, Cucumbers

 

 

 

 

 

 

 

 

 

 

 

 

Did you know veggies which grow under the ground tend to be higher in calories…?  I didn’t.  That’s not to say the other veggies are no good – but it’s an interesting fact.  If you’ve got a little one who’s on the “slender” side, including some of these higher calorie veggies each day could be one way to help him or her put on a little more weight.

This time of year there’s so many fresh veggies to pick from, it’s a cornucopia of colours!  We’ve got peas, carrots, beans, tomatoes, lettuce, swiss chard, and beets all outside in the garden.  Plus lots more at the veggie market.  So many options :).

Cheers, Shelley

 

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OMG… Shawn… his tube fell out!

And thus our day began :).

It was 7:00am on Friday and Shawn was already up and showered and well on his way to being ready to bike to work.  Henry had decided at 6:30am that it was time to Rise & Shine (much to my displeasure after having slept in the past 2 days!).   The cat was meowing at the end of the bed, excited about the prospect of breakfast earlier than usual.

And then it happened…

As I helped Henry slip over the end of the bed and land on his bum on the floor and I saw his feeding tube “button” (the part that’s supposed to stay in this tummy) laying on the floor :(.

Henry's g-tube

(A little background here – now that Henry’s mastered going down the stairs backwards, he’s convinced that as long as he turns around backwards he should be able to get down from anywhere…  the change table… our bed… sofas… regardless of the height.  So I’m now constantly on the lookout for his “bum-first” manoeuver indicating an imminent “slide” off whatever he is on.)

In my panic I yelled out for Shawn a little louder than I should have and this scared Henry… but he recovered pretty quickly with the prospect of something new on the floor to play with.  Needless to say, Shawn came running out of the bathroom in his robe wondering what in the world was going on so early in the morning.   He took one look at Henry grinning up at him, holding onto this feeding tube, and stopped still.

“Wha….???”

Then, I’m proud to say, we both sprang into action very well.  You’d have thought we’d practiced (and I’ll freely admit that I have… in my own mind at least).

Before Henry had even got his g-tube put in, I’d heard stories of tubes falling out.  We’d been warned that if we didn’t check the water regularly, it could slowly leak out and the tube will fall out.  Plus, there’s always the chance of defect in the balloon causing it to have a small hole, which is why we check it prior to putting a new one in.

But here’s the thing… we’d done what we were supposed to.  Those who know me well know that I’m a bit of an anxiety-ridden control freak (I choose to celebrate this character trait!).  This combined with the fact that Shawn’s an engineer… so very good at “quality control”… and we’re covered!   So rest assured… we’d checked.  This tube had only been in for about 3 weeks – since about mid-August.  And we’d checked the balloon prior to inserting it and had checked the water since.

And yet… there is was.. currently being played with by our curious 18 month’er… who, as a result, had a whole in tummy.  All I could think of was his stomach contents were leaking all over the floor!  Not the most glamourous (or accurate!) sentiment… but that’s what flashed through my mind.

Thankfully Shawn scooped him up and layed him on the bed and sent me to get a clean cloth to cover the hole (nothing was leaking out, by the way).  Then we planned… I got a new g-tube kit (once a tube hits the floor, it never gets reused), a glass of water, his syringe and extender tube from downstairs.  Shawn entertained Henry and kept him laying down on his back.  Since we’d just changed the tube a few weeks ago, we remembered exactly what needed to be done.  (We’ve only done this a couple of times so far… Henry just got this type of tube in February and it only gets changed every 3 months – normally!).   Shawn checked the balloon in the new tube – looked good, then I coated the tube with a water-based lubricant to help it slide in easier.

We’d unspokenly established our roles when Henry first got his ng-tube over a year ago… Shawn’s the “holder” and I’m the “shover-inner”.  Meaning it’s Shawn’s job to hold Henry down (regardless of how much he may not like it) and entertain him (usually with lots of songs), while it’s my job to shove in whatever tube we’re currently using.  By this point, Henry is often screaming at the top of his lungs and writhing furiously, but I try to block it out and focus on my job… get the tube in properly and as fast as possible.  As much as the hole in Henry’s tummy may gross me out a little (I’m his mama… I’m allowed to say that), his g-tube is WAY, WAY, WAY easier than his ng-tube used to be.  With this tube, there’s only a slight amount of a resistance and it usually slides right in.

Not always pretty, but nicer for all involved!

And with that, our excitement was over.  I gave Henry a bit of water through the tube, just to make sure it was in and working… and we all went down for breakfast.  I’m glad Shawn was still home, as it’s so much easier with two people.  But if needed, I could get it in on my own.   There’d be a lot of tears (likely from both of us), more rounds of itsy-bitsy spider than humanly plausible,  but it’d be done.  🙂

When we tested the old tube, it turns out there was a pin-prick sized hole in the balloon.  It didn’t show up when we simply filled the balloon with water – it wasn’t until Shawn squeezed it that water squirted out.  So it may have been there the whole time and we never noticed.

Now we know… when putting in a new tube… the “squeeze” test is needed…

 

Cheers, Shelley

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