Henry's Homemade Formula

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

Fun with letters and food… homemade tactile letters!

This idea comes from our friend Nicola Lott with Notch Hill Learning. Nicola is an early learning specialist who is all about playing with your kids.  We love it!

When I saw this project on her blog I knew it was one I wanted to try – it incorporates food and letters… perfect for Henry.  It was simple enough for an early morning activity, didn’t require anything special, and was something Henry could do mostly on his own.  Essentially, we spelt “Henry” with food (and lots and lots and lots and lots of glue!).  PERFECT!

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We checked out the pantry and found some foods we wanted to explore.  We chose rice, dried beans, quinoa, ground flax and dried chickpeas.  Then we traced the letters of his name with glue and he got to dump and shake the food around to cover the glue.  We worked together with the larger food items (like beans), since they needed to be placed more than just shaken.  Then we covered the food again with lots and lots and lots of glue.  Serious… Henry would love to just make a huge pile of glue on some paper and call it done.  Ah… “art” is in the eye of the beholder :).   We let it dry for a few hours, gave it an extra shake outside and admired our work.

 

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A word to the wise… if you kid’s like Henry then be ready to use half a bottle of white glue and have to clean the floor afterwards… but it’s all in the name of learning :).

We have it hung on the wall in the kitchen right now and I notice he likes to trace his fingers along the letters when we walks past.  Perfect for recognizing the letters in his name, and using food in another fun way.

 

Thanks Nicola 🙂

Cheers, Shelley

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Blender Breakdown… again!

Let me start off by saying that I love my Vitamix!!!!  And I really love Vitamix Customer Service!!!!

However… I love it less and less each time it breaks.  And this time… it was serious :(.

IMG_2541First… a little reminder…

We NEED this blender.  It’s not a toy or a fancy accessory… it’s how Henry eats.  No blender = no blenderized food.  No blenderized food and Henry can’t eat.  So we NEED this blender to work!

It’s broken down before,  but not this seriously.  The last time, customer service was able to send us new parts and we replaced them ourselves.  It never actually stopped working completely…

This time… it stopped completely!  I panicked…. SERIOUS panic!

We had been having trouble with it overheating and shutting off.  There is a built is auto shutoff, designed to ensure the motor doesn’t overheat.  A good thing in case someone is working it too hard, or using the wrong speed to blend something.  Simply wait a few minutes and it turns on again just fine.

However our machine was shutting off all the time.  And for no cause that I could determine.  I’d already contacted customer service and arranged a loaner so we could send ours in for repairs, so I was feeling confident.  Because we use the blender for “medical reasons” they will “sell” us a loaner machine for which they refund back all changes for once it is returned.  So yes, it costs a few hundred dollars, but it all works out in the end.

But the very next day, the machine quit and wouldn’t turn back on.  We always have some food frozen as a backup, but since parts are shipped from the US, it typically takes a week to get anything depending on how fast it goes through customs.  I didn’t have this much food.

 

So back on the phone with customer service…

In the end, I went to a local retailer that sells the Vitamix and purchased another one (another $600 on my Visa).  We used it for a week until our loaner arrived and then returned it.  I felt guilty, but it’s what customer service told me to do.  Apparently they allow all their retailers to accept returns with no questions asked.

A month later we got our original blender back with just about every thing replaced – at least that is what it looked like from the parts inventory included.

You’d think the story would be finished…. but no 😦

A couple of weeks later and the blender started turning off again.  I’d reduced the batch size… increased the liquid… and still it shut off.

 

So back on the phone with customer service…

This time… they are sending us a whole new blender! Yeah!  Since we never had any trouble with the two loaners… it must be something with our machine.

This is what I LOVE about Vitamix…

Every time I phone customer service they are FABULOUS!  I wish we didn’t have these troubles to begin with… but I am so pleased with how we have been treated.  And because we need it for medical reasons, they go out of their way to find solutions that will work.

THANK YOU VITAMIX!!!!!!!

🙂 🙂 🙂 🙂

 

(and cross your fingers our new blender is trouble-free!)

 

Cheers, Shelley

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Fun with Goop!

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We made Goop… and boy was it fun!

This idea came from my observation day at the Preschool Henry will be attending this fall.  Goop… aka… water + potato starch (or corn starch) + anything else you want + food colouring = a sensory delight for both of us!

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As you swirl it around it gets thicker and thicker… feeling slightly icky (my words) and slightly squishy (Henry’s words) between your fingers.  The more starch you add, the thicker it gets.  Once we’d explored the basic water & starch combination, we then checked out the dry goods section of our pantry to see what else we could find.

If memory serves we added cheerios, rice, quinoa, flour, beans, marshmallows, chocolate chips and smarties.  Then we added some colouring… one drop at a time.  The drops looked amazing – I wish I’d thought to take a photo of that.  By the time we were done we had one big brown blob of goop – not that attractive, but loads of fun.

For any kid – this would be fun.  For Henry – it was great to see him exploring the different foods and seeing what they do when they get wet.  Since he doesn’t eat by mouth, we talk a lot about how things turn “mushy” or stay “crunchy” or “break apart” inside your mouth.  The more he sees how foods change, the more comfortable he becomes with what happens when he puts something inside his mouth.

A word of caution though… be ready to get dirty!  Everything washed clean fairly easily, but the laminate floor was a bit of a challenge as the goop got in the grooves.  But since we also love mopping right now – this just made for our next fun activity 🙂

Cheers, Shelley

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New Boots!

Gotta love them boots!IMG_0901I actually debated A LOT about getting Henry boots.  He can’t wear his orthotics in them… which he really should be wearing as much as possible.  On the other hand… he needs something to wear outside in the rain.  It’s just not fair to tell a 3 1/2 year old that he can’t splash in the muddles for fear of getting his feet wet!  Last year we were forever trying to dry his orthotics and shoes out in front of the boiler.  In ended up that he was actually wearing them less… 30 minutes of fun outside meant wet foot wear for the rest of the day.

IMG_0902 So, I relented and we bought boots.  And they are cute :).

The compromise (in my own mind anyways!)… they will stay on the shelf in the coat closet and only be worn in heavy rain.  They will not become a daily occurrence (again… in my own mind!).

Cheers, Shelley

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Henry’s New Orthotics

We visited our friend Eugene at Hodgsons Orthotics earlier this summer, as Henry had outgrown his last pair of orthotics and needed new ones.  Sometimes I can’t believe how fast his feet grow!  The design is very similar to his last pair, with three straps covering the area from his toes to just above his ankles.   Notice the cool fish pattern this time :).  Henry needs Supramaleolar Orthosis, or SMO’s to help support his feet and ankles.  These are the lowest type of orthotics… meaning they do not reach very high up his leg.

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When wearing his orthotics, Henry typically takes a shoe size 1-2 sizes larger than what he would need otherwise.  And they have to be lace up… velcro or slip on just won’t go on over top.  He tends not to mind wearing them, and I think he knows that his feet need them.  In sock feet, his ankles sometimes turn and he falls more often.  Dr Reilly, our orthopedic surgeon, indicated that Henry will likely need some type of support for most of his childhood, especially during rapid growth spurts when his body is growing way too fast for his muscles to keep up.  On that note… we measured him this morning and he had grown over 2 inches in just under 4 months!

Here is a photo of what Henry’s feet look like when not wearing his orthotics:

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It’s a little hard to see, but his ankles turn in and he has very flat feet.  His left side is significantly worse, and he will actually drag his foot behind him when not in shoes.

But with the orthotics on, he walks with his feet almost parallel, and with much more control.

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We had some challenges this time around, with it taken significantly longer to get the orthotics.  The first set we received were of very poor quality, which didn’t make me happy.  But what I did very much appreciate was Eugene’s candid response that he was unwilling to give us an inferior product.  I didn’t even need to say anything – he beat me to it.  He remeasured Henry’s foot and ordered new ones that same day.

So… we waited longer, but in the end we got a new set of orthotics that will support Henry’s feet perfectly!

Cheers, Shelley

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Elmo!… and Goodbye Krista – we will miss you!

We went to the Infant Development Program (IDP) picnic this summer… and they had someone painting tattoos!   I realize this is not monumental… but Henry had never actually let someone paint on his face or arm before.  We’d approached… discussed… watched… left… but never actually got the picture painted.

So when he decided to actually do it here… I said “go for it!”.  He asked for Thomas… ended up with Elmo… and was absolutely THRILLED!

The picture says it all 🙂

Henry with Elmo

I made the casual comment that he go show Jen his Elmo.  He took me seriously – very seriously.  He then proceeded to spend the next 45 minutes (no exaggeration!) showing every family at the picnic his Elmo.  He walked up to a person, stuck out his arm, and yelled “Elmo!” as loud as he could.

No shyness here :).

What was just as fabulous… it didn’t matter if it was the 1st or the 10th time… each family was just as excited and enthusiastic in their response.  Thank you!

On a sadder note for us… the IDP program only goes up to age 3, so we need to say a very fond, very thankful, very disappointed farewell to Krista – our IDP consultant angel.  I still say – contacting them when Henry was about 1 month old was the best thing we have ever done.  We were in such a place of loss and confusion, and they provided the light at the end of the tunnel we needed.  If anyone is in need of support for their infant – take a look at their website to see if IDP can help!

We will miss you Krista!!!!!

Shelley, Shawn, Henry & Owen

XOXOXOXO

🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂

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Back to the hospital again…

Henry was back in the hospital again with trouble breathing, for two full days and one night this time. Poor little guy… when he gets sick his little lungs just can’t keep up and he has to work so hard to get the oxygen he needs.

I feel like I can just copy and paste the post from the last time he was in… it was almost exactly the same.

He was up almost all night fussing… Shawn got almost no sleep.  I got up around 4 am and as soon as I turned on the lights I could tell right away something was wrong.  As before, he showed beginning signs of a cold during the day – runny nose, mild cough – so I plunked him into bed an hour earlier.  He didn’t complain so I knew something was definitely up.  But Granny had been over to play, so he was exhausted from that too.  Again, he wasn’t throwing up, which he often does when sick.

We used Ventolin and this time is seemed to help a bit, so we thought we might not have to go in.  But about 30-40 minutes later he was haven’t trouble again.  Unlike last time, when he said he needed to go to the hospital… this time he said he didn’t know.  But that didn’t surprise me as in the last week he’s stopped “knowing” anything.  “Mama choose” is his latest thing.  But what he did know was he wanted to go the hospital to see the bathrooms!  (hey… we’re 3… bathrooms are a big thing!).  So we had to be doubly sure we were going because it was actually hard to breath… and not just to check out the toilets :).

Same as last time, he has do much energy.  Even with almost no sleep, he was still on the move.   He helped pack the bag and get dressed.  He chatted the whole time and seems happy to be going for an earlier morning road trip.  I have to admit, even though he said he was having a hard time, I still second guessed my decision to go to the hospital… he just looked too darn energetic!

The intake nurse said that his lungs were clear (great!), but that he was definitely having increased work of breathing.  So we waited a few minutes for a room, and began the usual asthma protocol right away.

We were again optimistic we would get home sometime the next day – but it didn’t turn out that way.   In the ER, they couldn’t extend his Ventolin past 2 hours (4 hours between treatments is needed to go home), so plans were made to get admitted.  After being in the ER for about 13 hours, we finally moved upstairs.  The ER wasn’t busy this time, but there were no available beds in the wards, so we had to wait.  He and Shawn spent the night and we were home the next day by dinnertime.

Upon reflection, we should have given him Flovent as soon as he got sick, but I didn’t think about it.  We’re still new to this medication, so it didn’t cross my mind.  But I’m certainly remember it for next time!

In the end… we’re back home and back to normal.  Henry’s still coughing something crazy, which will likely continue for a few weeks as he tries to clear his lungs.  But we’re home… the sun is shining… and things are good.

Cheers, Shelley

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Ice cube tray popsicles

 

Amina, our OT, has said many times that cold foods may help trigger a swallow.  Apparently the feeling of cold foods in your mouth can help signal to the brain that a swallow is needed.  So, to this avail, we decided to make popsicles!

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We love popsicles around here.  Just about any type of fruit juice will do.  To make them a bit more “kid friendly” I decided to make popsicles in ice cube trays.  Shawn had the suggestion to cover the container in plastic wrap and then use toothpicks as sticks.  By pulling the plastic wrap tight, the tooth picks can be “punched” through and the wrap holds them in place until frozen.

The sticks ended up a bit crooked, but not too bad.

However, after all this work… Shawn & Henry had popsicles for snack today and Shawn ended up with the small one and Henry the big one!

Oh well… such is life.

This was Henry’s first exposure to popsicles this year… he licked it a couple of times, touched it with his fingers, and watched it melt.  Complete success 🙂

Cheers, Shelley

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Eating ice cream (photos taken on the sly!)

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We decided to have chocolate ice cream for afternoon snack this week.  I took a couple of photos – covertly so as to not mess with the ice cream karma!

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While not such a flattering photos… it’s an excellent portrait of the ice cream mustache!

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It was an interesting experience this time… he was very concerned about how much ice cream was on his spoon each time.  He kept saying “daddy help” – he wanted Shawn to scrap the ice cream off his spoon so he could try again.  I think the ice cream was harder than it had been, so he didn’t have as much control.  But what was interesting – he had a very specific amount that he was wanting to get on his spoon.  He couldn’t articulate it well, but over the course of a few minutes we could see what he was trying to accomplish.  He knew exactly how much he wanted in his mouth at one time.  Any more and he would scrap it all off and try again.

Just goes to show… he knows what he he needs and what he thinks he can handle.  Our job is to just support him as much as we can.

Cheers, Shelley

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Food Pager… the joys of an active imagination!

 

Ah… the joys of being 3 🙂

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Henry came to the table a while ago wearing his “food pager” and “food cell phone” (conveniently attached to the waistband of his pajama pants using a cord from his blocks).   According to him, the pager told him when and what to eat.  Each time before tasting anything he would hold the pager up to his ear to listen to what it had to say.

As wonderfully cute as this was to watch unfold, it really demonstrated how much his eating, or not eating, is becoming more of a choice.  Yes, he still has low tone, and yes, this certainly still affects his ability to eat.  But he’s also a very perceptive little 3 year old who watches everything that goes on around him.  He knows that everyone else he knows eats with their mouth.    And he knows that we want him to eat with his mouth when he’s ready.

 

But the big question is… what does it mean to be “ready”?

We used to think being ready simply meant having his muscles become strong enough to swallow.  Then we realized that he would have to learn “how” to eat.  Most kids begin learning from day 1.  Henry didn’t so now he is learning step by step what to do with the food in his mouth in order to get it ready to swallow.

But that’s not all… There is also a powerful mind game going on inside his little head.

Everyone wants to me to eat with my mouth.  I think I might want to eat with my mouth.  Other kids I know eat with their mouths.

VS.

Food in my mouth it doesn’t feel right.  I don’t know what to do with it.  I have strong memories of choking, coughing, vomiting and pain associated with food in my mouth.

 

So what to do…?

Creative play… aka… the food pager!

The food pager was around for about a week, and then on and off again for a while after that.  It still makes an appearance at times.  When it does we diligently listen to what it has to say, and respond accordingly.  After all… who am I to disagree with prowess of the “food pager” :).

Cheers, Shelley

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