Henry's Homemade Formula

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

Changing Henry’s g-tube button

Tonight we changed Henry’s g-tube…

The brand of g-tube that Henry has is called a MIC-KEY Low Profile Gastrostomy Feeding Tube, manufactured by Kimberly-Clark.  The “button” portion of the feeding tube needs be changed every 3 months, and this time I took photos as we did it (must mean we’re feeling more confident about changing it!).  If you’d like some general information on what a g-tube is, start by clicking here first.

It is actually a very simple process and WAY easier than changing his old ng-tube.  But having said this, we were still freaked out the first few times we had to insert a new button.  Something about the gaping hole in my baby’s stomach and the stomach juices seeping out is just unnatural.  This all sounds very melodramatic, and for me it still is at times, but in reality it is a relatively small hole and only a small amount of fluid may leak out.

To get started, here’s a photo of Henry’s tube:

Sorry for the hand in the way, it’s the only shot where he’s still enough that it is partially in focus! But it gives a good idea of where on his belly the tube is located.

Here’s some photos of the “tools” involved:

This is what the kit looks like that the g-tube comes in.  Also included are two syringes (35ml & 12 ml), some gauze, one extension tube (which is what we use) and one bolus extension tube (used primarily for syringe feeding).

Also required is a glass of water and some water-based lubricant.

 

 

Each kits also contains a full instruction manual, which – even with all our training at the hospital –  was very helpful at the beginning.  The manual can also be found online here.

 

 

 

Here’s a photo of the g-tube, prior to being inserted into Henry’s tummy.  I know it’s hard to see – I chose the wrong background… but the next one’s are easier.  Henry’s tube is a 1.5 cm, number 14 french (that’s the size).  As he grows, so will the size of his tube.

 

 

 

Once all the supplies are ready, the next step is to “test” the balloon.  The button is held inside Henry’s tummy by a small balloon containing 5 ml of water (as he grows, so will the size of the balloon).  This balloon needs to be tested to ensure there are no small leaks in it.  We’ve had one tube fall out already – after only being in for 2 weeks – and it was because of a very small pin-point hole in the balloon, so we definitely know the importance of testing!

 

Here you can see the small syringe inserted into the balloon port of the tube, and the balloon inflated with 5 ml of water.  This is exactly how it will look once inside Henry – the balloon is inside his tummy and the rest is outside and can be seen.

 

This next step is to remove Henry’s current button.  To do this, the same syringe is used to remove the water that is inflating the balloon.  While the balloon is supposed to have 5 ml in it, it is also slightly porous so water slowly seeps out into Henry’s tummy.  This isn’t a big deal, and we check the amount of water in his balloon weekly.

It can pull a little on the way out, but with a little twist the tube comes out easily.

 

It’s at this point that Henry becomes our little octopus boy, and Shawn’s main task is to keep him lying down – no small feat!  It doesn’t hurt to do any of this… slightly uncomfortable when the tube is actually pulled out… Henry just hates being forced to lay down (well actually… he hates being forced to do anything… he certainly has his mama’s stubbornness!).

 

Here is a photo of Henry’s tummy with the button removed.  This is the part that still kind of freaks me out (and it’s ok if it freaks you out a bit too).  It doesn’t look bad at all… it’s just a small hole and it’s always slightly red around the edges.  The redness is perfectly normal, and Henry’s stoma (that’s the fancy name for the hole) looks better than others we’ve seen.  The redness is just because it gets bumped and pulled throughout the day as Henry moves and plays.  If he doesn’t have a bath one night, it gets some build up of dried fluid, but so far we’ve been really lucky.

 

The stoma can get very inflamed and start growing tissue – it’s the body’s natural reaction to the hole.  When Henry’s tube was first put in, we had problems with that for about the first 3 month.  But that is apparently quite common and it’s been really good ever since.

 

Here’s a photo of the tube we removed from Henry’s tummy.  When compared with the earlier photos, you can see that over the 3 month period it gets quite discoloured.  This is normal and is due to all the foods and stomach acids inside Henry’s tummy.

 

 

 

And finally, here’s a photo with the tube inserted.  A little bit of water-based lubricant on the end that goes into his tummy and it slips in easily.  Fill the balloon with 5 ml water, give it a pull to ensure it’s snug and we’re done.  Henry’s trying his darndest to get up… it’s bath time and he wants outta here!

 

I hope this overview of changing Henry’s tube is helpful as I know it’s not something most people are familiar with.  If you have any questions, please do not hesitate to ask!

For more information about the mic-key feeding tube, to read stories of other users, or general information about Enteral Feeding, check out the Kimberly-Clark website… it really is quite good.

Cheers, Shelley

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Preparing Henry’s food… a photo journal (Part 1)

As I was making Henry’s food last time, I thought I would take some photos along the way.  When I first started researching homemade blended foods it was other family’s blogs that provided the best source of information – and the photos really helped.  So… in the spirit of good karma and passing along the kindness… I thought I would do the same.

To start with, here’s a photo of all the ingredients.  In reality, I’m not usually this organized and usually pull things out of the fridge as I go.   I tend to make single batches, and often will make Henry’s food as I am making our dinner.  Many families prefer making larger batches to store either in the fridge or freezer.  While I have made larger batches myself, I find it just as easy to make it daily, and this also allows me to know exactly what he is eating in case he starts getting sick.  We’re pretty good at knowing which foods Henry tolerates and digests  best, but I’m not 100% confident yet.  I will sometimes do 2 batches up… just to give myself a day off :).

In general is takes about 20 minutes from start to finish, assuming that the “based” items are pre-made.  These include things like rice, quinoa, chickpeas, boiled eggs, etc.  For these items I will generally cook 3-4 days worth and store in ziplock containers in the fridge.

Today’s menu for Henry’s food includes:

  • Grains: 1/2 cup quinoa & 1/2 cup wild rice;
  • Fruits: 1/2 cup frozen peaches (thawed) & 1 medium tomato;
  • Veggies: 1/2 cup raw broccoli, 1/2 cup left over boiled potato & some left over steamed beet greens that needed to be used up;
  • 1 cup rice milk;
  • 2 ounces left over chicken
  • 3 tbls Sunflower oil
  • 2 tbls molasses
  • 1 coenzyme Q10 tablet

For the grains, I will cook up larger quantities and store them in the fridge or freezer.  I tend to do a few days worth at a time, as this can be a time consuming step.  It’s not hard… I just need to be organized and remember to do it (which I don’t always!).

For the fruits & veggies, I don’t tend to cook the items, unless they are especially “hard” when raw (like yams or beets).  The food gets blended for so long in the Vitamix that they are cooked by the time it’s done anyways.  I will roughly chop into chunks, but don’t worry about getting things a certain size… let the blender do the work.

    

 

 

 

 

 

 

 

 

 

Today I used 2 ounces of chicken, as we have leftovers from a family dinner on the weekend.  I purchased a kitchen scale earlier this year for this purpose as I had no idea how much an ounce “weighs”!  I bought a nutritional scale that could tell me all sorts of fun (aka useless) facts about the things I am weighing, but don’t use that functionality at all!  All I really needed was a simple scale, but I didn’t know it at the time.  I no longer do a daily spread sheet for each menu, but even when I did, I used the information from the Nutrient Database (see Helpful Websites on sidebar) not the pre-programmed information from the scale’s database.

 

 

 

 

Next up comes the rice milk.  The Homemade Blended Formula Handbook says to put the liquid in first, but I’ve found that most times this isn’t necessary.  If you’re using something very thick that is hard to permeate, like oatmeal, then putting liquid in first is important.  But as long as you’re using foods where liquid can seep down to the bottom, then the order the items are placed isn’t that important.

For me, what is more important is putting any hard to blend items in first so they are closer to the blades.  I find if I put things like rice in last, then I get pieces floating on the top of the blender and it’s harder to push it down into the blades.  Peas are another one… must be close to the blades or the pea skins separate and don’t get blended enough.

The other liquid items are the oil and molasses.  Some people have asked if the oil seperates out of the food as it is stored, but I’ve never had a problem with this.  When I froze Henry’s food, this happened once, but it was easily whisked back in after reheating.

I do need to ensure the molasses is poured into the centre of the container, not down the side, as it sticks to the container’s sides and is hard to get off while blending.

 

 

The final item is one 30 mg Coenzyme Q10 tablet, as recommended by Dr Bratt.  This was recommended for improving muscle function and was recommended specifically for Henry based on his low tone (any medication or supplements would need to be specific for your child’s needs).

The tablet dissolves completely and we’ve never had any problem adding it into the food.  Some medications cannot be blended into the food, but must be given separately orally or through the g-tube.  Henry also gets 1000 IU Vitamin D, and this goes directly into his tube each day.  Again, the 1000 IU dose was recommended specifically for Henry by his neurologist, and should not be given to other children unless by medical recommendation.

 

Once all the items are in the blender, I put on the lid and insert the tapper.  It usually takes several minutes to blend the food, depending on what foods I’ve used that day.

For more information about the next steps – measuring, jarring, and storing the food – see Part 2 of the photo journal.

Cheers, Shelley

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Preparing Henry’s food… a photo journal (Part 2)

This second installment focuses on what happens after Henry’s food is already blended.  If you’d like to see photos of what goes into the food, check out “Part 1” and/or some of the sites on my blogroll – they’re also a great source of information.

Here is Henry’s food, already blended in the Vitamix blender.  The tall thing sticking out the top is the tamper – it is what is used to push the food down into the blades to ensure everything gets blended evenly and completely smooth.  Here is a picture (from the Vitamix website) of what the tamper looks like:  
The tamper is also used to draw the foods down from the top of the container into the blades – by pressing it into each corner and holding it there, a suction is created from the top down.

It usually takes anywhere from 4-10 minutes to get the food to the desired consistency – slightly thinner than cake batter.  More importantly, completely smooth with no lumps, grit, or fibrous pieces.  The timing depends entirely on what food are included that day… harder foods, larger chucks and more fibrous foods take considerably longer to blend.

 

 

Each batch of Henry’s current menu makes about 5 – 200 ml jars… sometimes a little more, sometimes a little less – again it just depends on the foods used.  Henry used to have more each meal – closer to 240 ml, but he started throwing up again so we cut it back. I think he may have been in a growth spurt before as he just doesn’t seem as hungry now.  We’re constantly adjusting this amount.

I put a little oil on the rubber end of the 60 ml syringe to help is slide easier.  Without the oil it is extremely hard to suck the food into the syringe.  Plus, the more times the syringe is used, the harder it gets.  Our funding provides 2 syringes each week, but I tend to use one longer – as long as it is washed well and pulled apart to dry, each syringe can be used for 1-2 weeks at least.  You can tell when it’s time to change – the rubber tip has expanded so much it will no long fit inside the other part.  Even with the funding… I like to use things as long as I can… all the waste adds up.

 

Here you can see the syringe filled with food.  Once once jar is filled with the right amount, I will sometimes “eyeball it” and free pour the remaining food.  But frankly, it’s just as fast and probably easier to keep using the syringe.

Right now I’m using 500 ml jars – so they’re not even 1/2 full.  But the old 250 ml jars didn’t leave enough space for whisking the food once reheated.  I bought some plastic lids for the mason jars, so I don’t have to use the canning lids.  I like mason jars as they can go in the freezer, fridge and microwave.  We’ve broken one (in a spectacular slide off the counter, bounce off the chair and crash into the wall!) which sent glass and food across the entire room… but other than that – they’ve worked well.  I reconsider using plastic every once in a while, but I don’t want to microwave it… so stick with the glass jars.

I like the wide-mouth mason jars as the flat sides make it easier to get the food out.  I also have some 500 ml regular mouth jars that I’ll use in a pinch, but it’s much easier to get the food into Henry’s feeding bag.

 

Here they are, all finished and in the fridge.  The 500 ml jars take up considerably more room than the old 250 ml ones, so they share the top shelf with the egg cartons :).

Once cooled, the food thickens quite a bit, so prior to heating up we add more liquid – usually rice milk, juice or water.

The whole process usually takes about 30 minutes.  I tend to make up the food and put it in the Vitamix container at the same time as I’m making dinner.  Then it sits in the fridge until after dinner and I blend it while Henry is upstairs having his bath.  (My usual pet-peeve… the Vitamix is too loud!)

 

 

If you have any questions, or would like more information about making homemade blended food, please feel free to leave me a comment!

Cheers, Shelley

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Preparing Henry’s food: a photo journal (Part 3 – feeding Henry)

The final step in preparing Henry’s food is getting ready to feed him.  This has been on my mind recently as my mom was staying with us and she looked after Henry for the day, for the first time.  She was very excited, but also nervous, as this was the first time she would be feeding him on her own.  My mom is from out of town, so while she doesn’t see Henry as often, when she comes she tends to stay longer than our other family.  She had already spent time learning the various steps involved, meaning that Shawn & I were also paying more attention to what exactly we did, so that we could be consistent when showing her.  It got me thinking about how far we’ve come and how much we’ve learned in the past year and a half!

The first step is to prepare the food.  As it is usually coming straight from the fridge, it needs to be reheated – we microwave it for 25 seconds.  We’ll usually add a small amount of liquid – juice, rice milk ,water – to ensure the top of the food doesn’t get overcooked and harden.   The goal isn’t to heat the food a lot, just bring it back to room temperature.  While he has eaten cold food, we try to avoid it if possible as too cold food straight into a g-tube can cause stomach upset and diarrhea.  Henry doesn’t warm up his food by chewing it, so we warm it up for him.  There have been times, usually when traveling, that we’ve been unable to warm it, and so far there hasn’t been a problem.

 

Next up the food is whisked well.  This is to ensure there are no hot spots from the microwave and to remix the food, as it thickens in the fridge.  At breakfast time we add in 1.5 tsp of PEG into his food, and 1 drop of D-drop Vitamin D supplement directly into the extension tube.

 

 

 

Here’s a picture of his food, ready to be put into the food bag.

 

 

 

 

Here’s the fancy one-handed move I do so that I can hold both the jar and the food bag with one hand, and use a spatula to scrape the remaining food out of the jar.  Pretty impressive huh?!?

 

 

 

 

Here’s our clever “hanger”… aka… the paper towel roll holder!  But seriously, it works great, the spacing is perfect between the food bag and the pump and it’s much better than using a hospital pole clamp!  Although I saw a banana hanger the other week with a really sturdy base so I may go back and buy it.

 

 

 

 

Next up we prime the tubing of the food bag.  The pump has a button to prime the tube, and if you closely you can see food is partially the way along the tube.  We always prime the tube to remove the air – we don’t want all that air going into Henry’s tummy.  Now realistically, the entire tube only hold about 11 mls, so it’s not a huge amount, but we still don’t want it in his tummy.

 

 

 

Now that the food bag is ready to go, we prime Henry’s extension tube, again to remove the air.  We use a 30 ml syringe for this.

 

 

 

Then the extension tube is attached to Henry’s button.  This photo was taken at breakfast, so Henry was wearing his p.j.’s.  When he has a t-shirt on, the tube just comes out the bottom of his shirt.  We then flush the tube with 15 mls of water.  This is to wash through any debris that may be in the tube or his button and helps to prevent clogs.  It also provides some extra water.  The amount of water used depends on the person… the bigger the person the more water (usually).  Just like an adult has a bigger drink of water than a child does.

 

 

 

Now it’s time to attach the tubing from the food bag to the extension tube.  Henry’s helping put the “red” thing in (the red part is the end of the food bag tubing).

 

 

 

And here we are all done.  Henry & I are having a breakfast picnic this morning, sharing a bowl of cereal and some juice (the trains eventually end up in the juice and some of the milk on the floor!).  We try to also have some foods available for mouth eating at the same time as Henry is eating from his food bag.  It doesn’t always work out that way… but that’s our attempt anyways :).

 

 

After Henry is done eating, everything gets cleaned with hot water.  We rinse the bag out several times under the tap and then fill it completely with hot water (500 mls).  It then gets hung from our kitchen cupboard handle and the water is drained through the tubing to rinse it clean.  We use a plastic cloths pin to squeeze the tube in just the right spot and this lets the water free-flow through without having to stand and hold it ourselves (thanks to our night nurses last year for this tip! Must use a plastic cloths pin, not wood, or else the rubber tubing gets ripped).

 

While the extension tube is still attached, we flush it with another 15-20 mls of water to push the remaining food through and rinse out his button.  Then the syringe and extension tube are also washed with hot water and left open to dry.

Well… that brings to a close this series of posts on preparing Henry’s food.  I hope it helps explain the steps involved and, more importantly, shows that homemade blended food isn’t that hard.

I recognize that for some families… life is just so overwhelming that the idea of making blenderized meals is way too much.  But with some practice and organization, it has become just another part of our daily routine.

As always, if you have any questions, or comments, feel free to contact me.

Cheers, Shelley

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9.5 kgs, 81.5 cm & 24 degrees!

What may appear to be a random list of numbers to some are a delight to be heard for us.  We had some follow up appointments at the hospital today and both turned out better than we imagined!

We started with Dr Reilly, the back specialist, at bright and early at 8:00am this morning.  Both Shawn & I were stressed about this one.  When we saw him in the summer, he was very concerned with the curve in the lower portion of Henry’s spine.  It curves from right to left and it quite visible when Henry is sitting down. The x-ray report said it was a 43 degree curve at the time.  Henry wasn’t walking at all back then and his muscles just weren’t strong enough to support his spine.

This time….

Henry’s back looks GREAT!!!

Yippee!!!

This x-ray showed about a 24 degree curve, but Dr Reilly said he really didn’t care about the x-ray.  Looking at him walk it’s obvious that his core muscles are improving.  He was bending down to play with his toy, reaching up to grab things off the table and generally being an active little toddler.  The Dr. said that if he’d been emailed the x-rays and never saw Henry in person, he’s be worried.  But having seen him, he’s thrilled.

I asked him what accounted for the huge change in numbers and, like in a lot of ways, number are just numbers.  The x-ray is only as accurate as the position Henry is in when it’s taken (and given that he refuses to lay still for anything…).  So… whether the last x-ray just wasn’t very accurate or whether Henry’s back has improved that much… who knows (and who cares!).  Probably some of both… but what matters is… it’s improving.

What’s more exciting is that Dr Reilly fully expects it to continue improving.  The more Henry stands; reaches; goes up on his toes to try to get things he can’t reach; and moves in all directions… the more his core muscles will strengthen… the straighter his back can become.

Are we completely out of the woods… no – but it’s getting better every day!

 

Our second appointment was a quick weight & height check with Ali, the dietician from the Complex Feeding & Nutrition Team.  We weren’t worried about this one as we weigh Henry occasionally at home and we knew he was increasing.  But it’s always good to meet with Ali, and we get an accurate height that way too.

And…

Henry’s gaining weight perfectly and growing too!

His weight gain is a perfect curve… you couldn’t ask for anything better.  After a plateau for several months earlier this year, he is now back on his original curve from his first year and growing slow and steady.  What’s even more exciting for me is that his height is also increasing.  There was some concern last time that he was gaining weight but not height, which can be a sign of an under balanced diet.  But he’s shot up a few centimetres in the last months…

And… as if my day couldn’t get any better…

Ali also asked if I would mind helping her as she attempts to educate more people at the hospital about homemade formulas!  She says quite a few dietitians are starting to ask her more about it, as are the new GI doctors on the Feeding Team.  She is beginning to create some in patient protocols for homemade foods, as well as planning presentations for staff.  I feel like I’m in heaven on earth!

What an opportunity to make a real difference and pave the way for other families who are inquiring about homemade foods.  I recognize it is a lot of work and perhaps too much so for some families who are already under a lot of stress.  But at least if the information is more available, people can make an informed decision for what is best for them.

Yeah!!!

Cheers, Shelley


 

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Swimsuits and g-tubes

Let’s go swimming!

Henry & I love to go swimming :).  Our local pool has a great toddler pool and we love hanging out and splashing in there.  Henry has done a lot of his “firsts” in the pool… first time sitting up, first time standing, first time walking.  The water is a great therapy (aka play) place because it offers extra support, but also makes things more challenging due to the gentle water movements.  Every time we see Dr Selby, our neurologist, she asks about his time in the pool and encourages us to go more!

As we use cloth diapers, I began searching for a cloth reusable swim suit for babies.  I couldn’t see myself buying disposable swimmers… they just weren’t “us”.  Henry’s first swimsuit we found quite by accident at our local farmers market.  It was so cute!

 

It was homemade by a lady named Karen, at Sideline Designs, her home based business.  Shawn picked out the British racing theme one!  Henry didn’t have his g-tube then, so the fit wasn’t as important, but it did still work after he got his tube too.  Look at his chubby little legs :).

 

This summer we needed to get a larger one, as the Velcro kept coming undone as he crawled along the pool desk! So I turned to Sarah at thebabyfootprint.com for suggestions.  Sarah also operates a home based business near where we live and we have purchased cloth diapers and covers from her in the past.  She offers the Swimmi brand of swim diaper:


This is the one we got for Henry… too cute!  It has a very high rise in the front, but it is the soft side of the velcro, and is so soft that it can be easily folded in to lower the front height.  It fits nice and snug to stop any leaks, but also has plenty of room to grow so should last him for a while.  Thanks to Sarah who let me try it on Henry first to ensure it would work fine with his tube.  Why anyone would buy disposable swim diapers is beyond me!?!

Cheers, Shelley

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it’s potty time!

We’re contemplating on embarking on that right of passage of toddler-hood: potty training!

Right now, we’re more in the potty-learning stage…

Henry is showing lots of signs of readiness:

  • Consistently dry through naps
  • Going a couple of hours between pees
  • Near refusal to have diapers changed (I hadn’t heard this one before, but a friend of mine passed it along)
  • Lots of interest in the potty
  • Showing us when his diaper needs to be changed by pointing at it… and he’s consistently correct.  He does it more with dirty diapers than with wet ones – it’s got to be really wet before he asks for it to be changed.
  • Stand in the bath, point down and then pee.

Most parents I’ve talked to say this is a major undertaking.  My nephew was potty training for quite a long time… he just didn’t see what all the fuss was about.  While a friend’s little boy took under a week.  Everyone is different.

With Henry, we began by looking at what type of potty would work for him.  Because he’s just started standing on his own, but not able to get up or down without some type of assistance, we figured we’d need something a bit more supportive than your average potty.  We also knew that we wanted to start with a “potty”, not a reducer ring for a full-sized toilet.  With a potty, Henry could have more independence and hopefully be able to get on and off on his own.

So we turned to Amina, our Occupational Therapist, from the BC Centre for Ability.  While her primary role with Henry has been with feeding, she is trained in all sorts of “life skills” and helping children with all types of developmental delays adapt.

Here is a photo of the first potty she brought:


Sorry you can’t actually see the potty very much, I never took a photo without Henry sitting in it.  I have no idea what brand or model it was, there was no stickers or tags still on it.  Henry was very interested in it, but it was apparent quite quickly that it wouldn’t work.

  1. It is made of plastic which wasn’t heavy enough for him to pull up on.  It kept sliding along the floor and tipping over.  Lots of bruises!
  2. The hole was too big – with his cloth diaper on it seemed fine, but the first time he sat on it bare bum – he fell in.
  3. It didn’t offer enough back support – there were too much space between the hole and the back so he slouched over almost immediately.

Here is a photos of the next potty Amina brought over:

This is a standard Fisher Price model, with a custom wooden base built around it.  We saw a slightly newer, but almost the same, model in the Toys R Us Christmas catalogue.  Henry loved it immediately, and it offers much better support:

  1. The wooden base makes the potty heavy enough that Henry can pull up, turn around and sit down all on his own.
  2. It doesn’t slip on the floor.
  3. The hole is smaller, and it’s closer to the back so offers more support.
  4. The arm rests are at the right height for Henry to hold onto.
  5. His feet are firmly on the ground – important for providing stability.

Plus… our version has a Bob the Builder sticker on the lid!  Henry loves getting on and off the potty and playing with it.  He is a pro at sitting and standing – no help needed!

The next thing we had to think of is a means of communicating.  Because Henry is not talking yet, he has to have a way of easily telling us when he needs to go.  What ever this method is must be easily transportable from room to room, and in the long term… taken with us when we go out.  Shannon, our Speech Language Pathologist, has been helping us start a picture system for communicating (more about this in a separate post).  With the use of pictures, or pointing at his diaper when he needs to go, Henry will be able to tell us when he needs to use the potty.

Amina also dropped off a social story about using the potty – showing all the individual steps.  Social Stories are often used with children during transitions, or for activities they may be struggling with.  Social Stories are nothing new… parent’s have been using them for years as a way of telling kids what is happening next…

“Ok.. we’ve brushed your teeth and had a bath… what comes next…”

Because Henry loves books and pictures, the social story is a big hit, as are his various potty books.  He & Shawn cleared out the “potty book section” of our local library, but some of them I don’t like.  A lot have the theme of being a “big boy” when you can use the potty – but I don’t like that connotation… just because a child can’t use the potty, doesn’t mean he or she is not a “big” boy or girl. And since we have no idea if Henry is physically capable of “holding it” until he gets to the potty, I don’t want to instill the idea that if he can’t do it, he’s not a big boy.

Right now our favourite is “Potty” by Leslie Patricelli.  Cute pictures; not a lot of words; has the prerequisite pictures of a cat and/or dog (at least in our household that’s a requirement of every book!); and can be elaborated upon as we wish.  It’s also the one that Henry picks out most often.

So… as we embark upon our new challenge I can’t help thinking about how far we’ve come.  Like everything else… Henry will use the potty when he is ready… and not a moment before!

Cheers, Shelley

 

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Tools to develop oral eating: photos & descriptions

I was chatting with another Mom at the IDP Mother Goose program we’re attending and she was asking about how we’re “teaching” Henry to eat.  Her little guy is struggling learning how to process large pieces of food and she feels at a loss to help him. This got me thinking… we tend not to give kids credit for learning how to eat and drink… we think it just “happens”… unless of course it doesn’t happen – then we think about it a lot!

Eating is the act of…

  • taking food into your mouth;
  • using your tongue to push it towards the edges of your mouth;
  • moving your teeth to chew;
  • coordinating your teeth, tongue and cheeks to form the food into a bolus;
  • using your tongue to move the food to the back of your mouth;
  • and finally coordinating your tongue, cheeks and throat to swallow.

Doing all of this while not breathing at the wrong time and aspirating food or liquid into the lungs – is a highly complex process.  And one that is very difficult to learn if you’re not actually eating anything!  Most things in life get better as we practice… I may never be a concert pianist, but if I continue learning to play Wheels on the Bus on the keyboard for Henry, I will eventually get better (at least that’s the theory!).

But Henry has never eaten orally.  He didn’t breast- or bottle feed successfully, nor has he ever eaten any significant amount of any other foods or liquid.  So we’re teaching the “theory” of eating without actually doing it.

How…?

By starting our focus on non-nutritive stimulation (Amina, our Occupational therapist, loves this term!)

There are a surprising number of tools on the market to help develop oral eating.  It’s another one of those things… if you don’t need it, you’ll likely never know they exist.  I have provided my thoughts and description for each item, and a link to a website where more information can be found.

Here’s an overview of what we have:

Duo Spoon: one side is bumpy to provide oral stimulation and help with transitioning from liquids and purees to other foods.  The other side has `speed bumps`and helps encourage upper lip involvement and moving foods from the lip area into the mouth.  This is one of the first things we were given for Henry and he still uses it.  He uses it like a spoon and often dips it into foods to tasting.

 

 

Tri Chews: each side has a different texture so it`s great for providing lots of oral stimulation.  Plus, it`s triangle shape makes it easy for even little hands to grasp all by themselves.  Great for biting practice, which is what we are working on now!  Henry has had this one for over a year now.

 

 

 

Maroon spoons: these seemingly basic spoons make eating easier.  The narrow bowl of the spoon facilitates the top lip removing food from the spoon, and prevents a child from unknowingly getting large amounts of food.  They can also be cooled or frozen, as cold temperatures help to trigger the swallow reflex if delayed swallow is a concern (which is it with Henry).

 

 

Connector Krazy Straws: we love these!  Each package contains 5 mini straws, which can be joined together to make progressively longer straws.  They are colourful, bumpy and loopy – so make great mealtime play (yes… we play at meals!).  Henry can now successfully blow bubbles through one straw and is working on two – thereby increasing the strength in his mouth as the straw gets longer.  He can suck liquid up through one straw, although only does it occasionally, and is still surprised when the juice actually gets into his mouth!  I bought there myself, as I thought they were fun and it came with 5 packages of straw sets.  I think we`ll give one to Henry`s cousins so they can blow bubbles together :).

 

 

 

Infa-trainer Cup: this was the first cup that Henry would actually drink out of by himself.  It`s small size is easy for him to grasp and hold.  It`s hard to tell in the picture, but it`s a great design.  The cup is split in half lengthwise with only one half holding liquid (to limit the weight and volume), but still allow the cup to be `full`to make it easier to drink from without having to lean the head back too far.  The lid has no valve (like a traditional sippy cup) so Henry can get the liquid out.  Instead it has a flow regulator – by turning the lid to different positions, the flow of liquid can be changed from very small (drop by drop) to heavier (but still not a lot).  This way Henry doesn`t get too much in his mouth at one time and choke.

 

 

Flexi Cups:  the cut out of this `nosy`cup make it easier to drink without bending the neck back.  The plastic is flexible so the cup can be squeezed – helpful with thicker liquids or making the liquid come out in a narrower stream.  The cut out also makes it easier to see how fast liquid is coming out.

 

 

 

 

Having said all of this… at this stage, Henry eats with whatever he want to.  This includes his hands, our cutlery, toys, etc.  Anything that he is comfortable putting in his mouth, we encourage!  It takes some time to get used to eating with blocks and toy cars, but if it can be cleaned – it can be used to eat :).

I hope these descriptions are helpful if your little one is struggling with oral eating.  For more information, take a look at the various links and feel free to contact me.

cheers, Shelley

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Henry`s walking!

Henry walked all by himself!

Yippee!

He did it!!!!

Of course, he picked an afternoon when we missed his nap and he was totally exhausted – fell sound asleep by 7pm!  He had been getting closer the past couple of days… taking more risks; not quite to stringent about holding onto the next location before letting go of the first.  He was laughing, almost hysterically, as he walked back and forth between his toy basket and the couch… bring me more and more toys.  He not only walked, but bend down to pick up toys and turned around in circles.

Yeah Henry!

Cheers, Shelley

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Food you could build your house with… what was I thinking?!?

Ok… I’ll admit it… I was in a rush, totally not paying much attention to what I was doing and semi-randomly tossing foods into the blender. So it’s no wonder Henry’s food ended up looking like this…

No joking… it took me a few minutes to take the photos – I took 5 in all – and the food never moved!

The culprits are clear: yams, white rice, banana, oatmeal and chickpeas all mixed together.  Seriously, you could cement a roof with this stuff!  And while, upon reflection, it’s really quite funny… in actuality it’s no laughing matter.

The problem with food this thick, is that we have to add so much liquid to thin it down so it flows through Henry’s feeding tube, that the nutrition gets diluted.  What should have been one day’s worth of food – 5 meals – ended up closer to 8.  So all those wonderful vitamins, minerals and other good stuff that should have been packed into one day, lost their nutritional punch, so to speak.

Now, don’t get me wrong… I realise this one was all my fault – multitasking is NOT always a good thing… but at least I learned a valuable lesson – too much of a good thing can really be too much!

Cheers, Shelley

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