Henry's Homemade Formula

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

Foods high in zinc… important for growth!

In a previous post, I promised I would pass along more information foods high in zinc.  Zinc is mineral important for growth, and one that Henry’s dietician was wondering if he was getting enough of.  Because Henry’s homemade blended food contains both oil and molasses as sources of energy, it is important to ensure that the veggies, fruits, grains and meats included pack a powerful nutritional punch.  He doesn’t eat a huge “volume” of food, so getting a well balanced diet into what he does eat is vital.

At our last check-in with Ali, our “angel” dietician, Henry weight was increasing faster than his height… a possible indication of an under-balanced menu. Thus… she inquired about his zinc intake.

I, of course, had absolutely no idea!

I am a firm believer in the “Grandma-inspired” philosphy of having a colourful plate – if there’s lots of colour on your plate, then bets are you’ve got your nutrition covered (assuming the colour isn’t coming from different flavours of potato chips!).

According to the Dieticians of Canada document Ali sent, zinc is needed in small amount each day for optimum health, and it can be found in a variety of foods.  It also helps the body “use carbohydrates, protein and fat, strengthens the immune system and heals wounds heal”.  Given Henry’s age, he needs between 3 – 7 mg of zinc per day.  The best sources for zinc are seafood, meat, seeds, and cooked dried beans, lentils and peas. Looking at a typical menu for Henry, it seems he may or may not be getting his minimum 3 mg per day.

Here’s an example, using the amounted listed on the “Sources of Zinc” chart from Health Canada:

Grains:

1/2 cup quinoa – not listed on Ali’s chart, but according to another website it is an excellent source of zinc with between 2-2.8 m pg per 1/2 cup

1/2 cup wild rice – 1.2 mg

Fruits:

1/2 cup pears – not listed

1/2 cup banana – not listed

Veggies:

1/2 cup tomato – not listed

1/2 cup broccoli – not listed

*** the only fruits and veggies listed on the Health Canada chart are heart of palm, cabbage and mushrooms

Meat & Alt.

1/4 cup chickpeas – 0.3 mg

1 boiled egg – 0.5 mg

Milk:

1 cup rice milk – 1.1 mg, according to the Ryza package

Oil:

3 tbs olive oil

Extra:

2 tbs molasses

 

Based on this quick calculation, Henry is getting between 3-7 mg of zinc most days.  However, on days that he doesn’t have any quinoa in his food, he may be falling short.  On these days, it’s important to ensure he has meat – beef or poulty – to make up the shortfall.

All of this just reaffirms my belief that lots of variety is the key.  Henry’s little tummy has difficulty digesting a number of foods, but I still try to squeeze in as many colours as I can!

Cheers, Shelley

 

Source: Health Canada, “Canadian Nutrient File 2007b”

http://www.wholehealthmd.com/ME2/dirmod.asp?nm=Reference+Library&type=AWHN_Foods&mod=Foods&mid=&id=D18F2C4462B74726B0C2D1FD8A8A65B8&tier=2

 

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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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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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My new dietary best friend

I’ve finally found her…  the dietician of my dreams… and it only took 10 months!

We had our appointment with the Complex Feeding and Nutrition team at BC Children’s Hospital.  This team is part of the Gastroenterology Clinic, which serves patients with these major diseases and conditions:

  • Inflammatory bowel disease
  • Liver and intestine transplantation
  • GI bleeding and foreign body ingestion
  • Severe protracted abdominal pain
  • General gastroenterology, including complex digestion and nutrition-related
    conditions

Henry doesn’t have any of these diseases, but at the time he was throwing up a lot.  So this, combined with his g-tube and undiagnosed hypotonia, qualified us to see this team.  We waited about 3 months to get it, but it was worth it.  They are a relatively new team, so are not yet well known and many doctors apparently don’t know the difference between them and the Sunny Hill feeding team.  But for our needs, there is a HUGE difference – they know about, and totally support the use of, homemade formulas!!!!

With all my asking for help with homemade formulas, not one person ever mentioned this team.   When our pediatrician first refered us here, it wasn’t because of their knowledge of homemade formulas, it was because of Henry’s ongoing vomiting at the time (this was prior to the allergy test results).  Heaven forbid, we even considered cancelling the appointment…thank goodness we went!

The first hint that the dieticians on this team were different came from Rhonda, one of the dieticians on the neuromuscular team.  Click here for more details.  She casually mentioned that she has consulted them regarding Henry’s menu.  I was floored!  No one ever mentioned them before… and trust me… I asked :).

We saw the Team Doctor, Dr. Parsons, and their dietician, Ali Boyle.  As Henry’s vomiting has improved since his allergy tests, we didn’t have as much of a need for medical advice as before.  Henry does still get sick, so we chatted with Dr. Parsons about Henry’s current PEG 3350 dose and got some advice about the use of fish oil supplements.  He agrees that Henry’s vomiting is largely due to his low tone, and hopefully something that will continue to improve as his core muscles strengthen.  He also kindly referred to me as the “blender-lover”… what a nice complement :).

Our meeting with Ali, the dietician, was the highlight of the meeting – at least for me.  I was awe-struck!

Here was someone… sitting right in front of me… who seemed to share the same philosophy about feeding Henry as we did.  She totally supports, encourages and has knowledge in…

  •  homemade diets;
  • using a wide variety of foods;
  • “normalizing” g-tube meals as much as possible; and
  • integrating Henry’s meals into our daily lives.

I tell you – it was my dream come true! :).  Not only this, but she empathized with our experiences with other dieticians who tend to micro-manage (her words, not mine) mealtimes.  She didn’t panic, make us fear for our child’s well-being or in any way upset us.  This may sound strange, but frankly – most times we leave the hospital something has happened that makes us (or at least me) upset/worried/panicked/terrified…

I recognize that micro-management tends to comes from lack of understanding and experience with homemade, blended meals, but from a mom’s perspective, it was (is) very hard.  When constantly being told “no”; it’s not safe; he won’t be able to tolerate it; commercial formula is better (yeah right!); it was VERY hard to keep going.  But I’m so glad we did!

She didn’t actually have a lot of recommendations and was pleased with the current menu samples I brought in.

  • We agreed to increase Henry’s daily calorie intake again – up from an average of 850 to 900-1000. While there are lots of ways to do this (usually increasing grains, meats, and/or oils), I’ve increased his oils from 1 tbs to 3 tbs/day.  This adds the smallest volume.
  • We’re also incorporating sunflower oil into the rotation (now including flax, olive, canola, and sunflower).  I may get some safflower too, but frankly this is REALLY expensive, and the canola and sunflower give him the omega 3’s and 6’s he needs.
  • We’ve been slowly increasing the amount of each meal over the past months – now up to about 175mls each time.  We’re doing this very gingerly, as Henry does still get sick and we don’t want to push it.  So I’ve been increasing he water at the end of his meal first… watch for how he does for a few days… then increase the amount of food.  Sometimes it goes fine, but other times his vomiting increases – so I reduce it back down for a while.
  • She also suggested giving him some food between meals, instead of just water.  I’ve done this a few times, but have stopped again.  The first two times, Henry got sick at his next meal.  Plus he didn’t show any signs of hunger.  For us, Henry feeling hunger is very important, to help encourage his oral eating.  So I’ve stopped giving his food between meals, at least for now.  I have started giving him some orange juice instead – as this is higher calorie than just water, but digested easier so hopefully won’t interfere with this next meal.
  • She was also ok with our not feeding Henry over night anymore (at least she wasn’t NOT ok with it!).  She even commented that this made sense as many 17 months don’t eat over night – it’s a more “typical” meal pattern.  While we know this is a risk given he’s not gaining weight – and trust me… I agonized over the decision… and still do… for us, as a family, it was an important decision.  Shawn & I needed to get some better sleep.  We stopped about 3 weeks ago, and so far its ok.  If Henry were to start loosing weight, or show other signs, then we will go back to overnight feeds.

We all would like to see Henry gain more weight, but other than that – he’s doing great.  He has lots of energy, is doing more and more every day, and is learning new things at the “typically” amazing rate of an almost 18 month old.  In the end, our meeting was a HUGE success and we now have a dietician who will continue to assist us and follow Henry’s health in the future.

Cheers, Shelley

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Lessons Learned – June 2011

Lesson #1: Persistence, Determination and an (un)healthy dose of determination

The first BIG lesson learned last month really isn’t anything new for me… more of a reminder that it’s needed and it works.

If only I’d listened when people told me it couldn’t be done…

  • I would be continuing to spend all of 30 seconds preparing my child’s meals.
  • I would be continuing to pop open the can of commercial formula, measure out 6 scoops and add water.
  • I would be aching inside… wishing with all my heart that my baby could be eating something else.
  • I wouldn’t be spending 20-40 minutes a day choosing fresh ingredients, measuring amounts, washing, cooking, blending, and storing my child’s food.
  • I wouldn’t be providing a well-rounded, nutritional, good smelling, meal of foods that we all eat and enjoy (well almost all… I’ve never been much of an eggplant and zucchini fan!)

If only I’d resigned myself to the fact that throwing up was a “developmental condition”; likely related to Henry’s tube; hopefully to be grown out of; to be a part of our lives for gosh-knows how long…

  • I wouldn’t have kept asking – anyone and everyone who would listen
  • I wouldn’t have been so determined that something else was wrong, even when people disregarded my thoughts
  • I wouldn’t have continued to listen to that nagging voice in the depths of my soul… that voice for which there is no obvious cause, but which should never be ignored.

So once again, my stubborn-streak has earned its place in my heart.  It may not always be helpful (or so I think at the time); it may lead to more harm that good (sometimes); and may cause it’s share of strife in my life…but I have been endowed with my family’s stubbornness for a reason – I am determined to relish in its glory (and remember this moment, the next time it pisses me off!).

Lesson #2 – Remember the love

I love the fact that we are surrounded with so many people who are here to help us succeed.  From medical specialists, to friends, to family – there is this whole network of support, all “rooting” for our family’s happiness.  I forget sometimes to sit back and remember all that we have.  Each time Henry gets sick, it still brings tears to my eyes… and I think it will for a while. I know he’s doing great. And I know there’s no need to panic – but I still do.  That’s just me.

I am a member of a local Toastmasters (www.toastmasters.org) group and a few months ago I started doing presentations about Henry. For me it was therapy :).  I spoke at our local club, and to larger groups of people at various events.  The outpouring of support, advice and love is wonderful. It brings a smile to my heart and I just wanted to say thanks. 🙂

Lesson #3 – If it doesn’t seem right, ask again (and don’t sweat it all night!).

A couple of days ago I wrote a “rant” post (according to my sister-in-law) about how I was feeling.  Frustration, anxiety and the desire to give up were all swirling around in my head.  I just needed to vent, and I did, then I went to bed and had a great night’s sleep.  I also sent off an email to our dietitian asking her how in the world I was supposed to create a meal plan that only contained 9 grams of protein. It seemed impossible.

Her response…

“You will exceed Henry’s protein intake.  Most North Americans eat 2-3x their protein requirement.  Just try not to exceed 27g per day.”

Why didn’t she tell me this before!!!!  Now, in her defense… we don’t know each other well and as such, she doesn’t know that I am an “anxiety-riddled, details person” who follows instructions to the letter.  If she says “9 grams protein” than I will continue crunching numbers until I get it!

So, when I wrote her an email a few weeks ago confirming a few of Henry’s nutritional requirements (protein, calcium, iron, fibre), she simply responded “yes, you’re right – 9 grams protein per day”.  She never said this would be virtually impossible…or that almost no one in North America actually eats this much… or that I would drive myself crazy trying to meet this benchmark.  She simply said… “yes”.

And me… in all my wisdom… didn’t realize quickly that it would be impossible and rationally say to myself… “well, this won’t work – there must be something wrong here”.  No… that would be far too logical for me.  Instead I had to sit at the kitchen table for hours, driving myself (and Shawn) crazy, trying to do the impossible.  Nor did I listen to my rational husband, who said I should stop and try again in the morning.  No… I had to go to “crazyville” and back again, before I gave up.

This is a lesson I am bound to spend my whole life learning. Because, the thing is… you can’t be “persistent, determined and (un)healthily stubborn”, and give up easily – even when it’s the rational thing to do.  The two just don’t go hand-in-hand.  And since I just finished celebrating my stubbornness, I guess I will also have to accept that I am bound to take a few more trips to crazyville and back again.  I just hope there’s an HOV lane, so I don’t get stuck in traffic!

Cheers, Shelley

 

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A new supporter… sort of

When we found out about Henry’s food allergies, one of the first things I did was send an email to Rhonda, the current dietician, with the neuromuscular clinic at BC Children’s Hospital.  Previously I haven’t received must support from the hospital dieticians in my attempts with a homemade formula… basically I was told it wouldn’t work, commercial formulas were better (for a variety of reasons), and he’ll never be able to digest it.  But I persisted.

So, when we got these results, I thought I would try again.  Seeing as just about every commercial formula I know of contains corn syrup as the main source of carbs, I thought she might be more willing to entertain the idea of a homemade formula.

And…

She was!

She said (and I quote from her email)… “I would also like to continue following Henry with them and you so I can learn
more about homemade feeds as well.”

The “them” she is referring to are the two dieticians with the Complex Feeding Team.  Henry has an appointment with this Team (part of the GI department) next month, and according to Rhonda, the two dieticians on this team have previous experience with homemade formulas (why am I only finding out about this now!!!!).

Yippee!

Persistence, dedication, and a (un)healthy dose of stubbornness pay off once again!!! 🙂

 

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Henry’s Homemade Formula – 4th Attempt… diary, wheat and corn free!

Ok… so based on Henry’s allergy test results, I’ve been “back to the drawing-board” researching dairy- and wheat-free diets.  Henry is also allergic to corn, apples and cucumber – but these items should be easier to avoid.  It’s the dairy- and wheat-free part that I need to learn more about.

On her website, Dr Anita Bratt (www.drbratt.com) has some resources that got me started…. foods to avoid and foods that can be included.  The Homemade Blended Formula Handbook (continues as my absolute favourite resource!) also has sections on dairy and gluten free diets, plus charts comparing the nutritional content of various milk and milk substitutes.

Based on these… I worked out a new recipe:

Item Quantity Calories protein Fibre Calcium
Grains
Oatmeal ½ cup 74 2.5 2 100
Brown Rice ½ cup 108 2.5 4
Veggies
carrots ½ cup 35
brocolli ½ cup 22 2.8
Fruits
banana ½ cup sliced 67 1.5
Pinapple, canned in juice ½ cup 75
Dairy sub.
Coconut milk 1 cup 445 5 41
Brown rice milk 1 cup 110 2 1 300
Meat & alt.
Egg, boiled 1 78 6
Chick peas ½ cup 68 3.2
Fats
Flax Seed Oil 3 tsps 120
Totals 1202 18 14.5 441

Based on:

  • Calories: 800-900 per day
  • Fibre: 19 grams/day
  • Protien: 9.9 grams/day (1.1gms protien/kgram/day)
  • Calcium: approx 800 mg??? (I don’t know exactly how much calcium he needs – I’ve sent off this question to his dietitian.  Right now I’m basing it on how much he gets in his commercial formula.)

Food Choices

  • Grains: I went with oatmeal and rice for a couple of reason.  Firstly, Henry has had them both before and I wanted to limit the new items if possible.  Oatmeal is also high in calcium, something that I have to make up since he’s not having dairy.  Plus, they are a common household items for us.  However, I only ended up with 14.5 g of fibre – based on those items I could find information for.  So, I am going to look into other options that will increase fibre.
    • between meals Henry also gets about 20-30mls of prune juice, in addition to his water, and his constipation / diarrhea has been well managed for about 3 weeks.
  • Fruits & Veggies: my goal is to vary these as much as possible.  For now, I chose items we commonly have in the house, and ones that Henry’s has had before, both through his tube and tasted by mouth.
  • Dairy Substitutes: I chose to use coconut and rice milk to get the combination of calories and calcium I thought I needed.  I actually ended up high in calories, so I may use more rice milk next time.  I was originally going to use almond milk, but it contained cane sugar as a sweetener – and while this wasn’t listed as “moderate” on Henry’s allergy test results, it was elevated.  So I thought it best to avoid it altogether.  As I’m not sure how much calcium he needs on a daily basis, this may need further refinement.
  • Meats & Alternatives: chick peas are a good source of fibre, so I included them once again.  I’ve heard they can be harder to digest, so I’ll watch this.  I used egg this time as Dr Bratt encouraged lots of egg yolk – great fat for brain development.  Plus, Henry’s allergy testing showed it to be fine.
  • Fats:  Dr Bratt recommended continuing with the flax seed oil, and adding coconut oil – both great for brain development.

 

Method

I prepared it the same way as before – cooking each ingredient individually then combining them in the Vitamix blender.  The recipe resulted in 5 cups volume.  To achieve Henry’s 24 calorie/ounce diet, I added additional fluid to make 6 cups.  Henry is currently tolerating approximately 160mls each time he eats, so this will result in about 8.5-9 meals (with the Vitamix, some volume is lost in the tubing and bag).

Henry had his first meal of this new homemade blended formula today at lunch.  He appeared to tolerate it well.  Lunch time is nap time for us, and he peacefully drifted off to sleep, the same as usual – a great sign.  With previous homemade formulas, Henry wouldn’t sleep.  At the time I thought maybe he just wasn’t tired for some reason and was having a “nap-strike”.  But looking back, that was likely a sign of his intolerance, and I just didn’t know it.

Here’s to a dairy-, wheat-, corn-, apple- and cucumber-free homemade blended formula!

Cheers, Shelley

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Progress Report & Naturopathic Doctor

It’s been about a week and I’ve backed off the homemade formula for a while.  Henry had been throwing up alot and we didn’t know why.  He was throwing up such thick phlegm than he was choking on it and couldn’t get it coughed out.  This, combined with the bloating and constipation made us think that he isn’t able to digest part of the formula.  We went back to commercial formula and expressed breastmilk until his vomiting is under control.

We visited Dr. Anita Bratt, a Naturopathic Doctor about 2 weeks ago – to see if she could add into more information into Henry’s condition.  We originally thought we wanted allergy testing, but were also open to her suggestions.  She agreed with the allergy testing as the first step, perhaps followed by a stool analysis.  She agreed that it certainly seems like he’s not digesting part of the formula, so if we can identify what it is, perhaps we can eliminate / replace it – and he’ll tolerate it better.  She also finds it strange that sometimes he doesn’t throw up at all, and other times multiple times a day.  Some allergies occur with combinations of foods, so perhaps this is part of it.  Or… perhaps it’s something we have no idea about!  (Too many “what ifs…!”).  We go back in a few weeks to get the test results.

 

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Some initial success & new-found help

I did some more research online a couple of day ago and found some great blogs from other mom’s. Full of useful tips about ingredients, timing, volumes, etc.

  1. http://www.samuelsformula.com/
  2. http://ainsleyrae.blogspot.com/2009/01/blenderized-diet-for-g-tube.html
  3. http://psychmamma.wordpress.com/2010/12/28/homemade-blenderized-formula-for-g-tube/#comment-3532
  4. http://prayingforparker.com/1707/blenderized-diets-for-g-tube-fed-kids-featuring-greensbury-market-oranic-beef/

We’re back on EBM now, mixed with 1.5 tsp of formula powder increased the calories. Henry tolerated it well for breakfast this morning. Will do 2-3 times per day, as our supply lasts.

Tried his homemade formula for lunch yesterday and he kept it down!

Did 4 cubes of homemade formula (120mls) mixed with 75mls of water. End result was about  150ml. And it was thin enough to go through the pump. While this isn’t that important, at lunch Henry usually falls asleep while having his milk and has a nap – so easier to use the pump than a syringe. Only gave him 100mls of the formula. He was asleep and not showing signs of distress, but I didn’t want to overfill his tummy given then new foods. I know it’s not sustainable longterm, but I figure it’s ok while starting. He ate again at 3pm snack time and that stayed down just fine with no signs of distress. So it think he digested it just fine! Going to try again tomorrow at lunch time, and try for a larger amount. Because I watered it down and didn’t do the full amount, I don’t know how many calories were in it, but I don’t mind. Henry’s doing well and one meal a day of experimenting is ok, in my books.

I read in one of the blogs that people digest heavier foods better at midday, which makes total sense… that’s when alot of people eat their largest meal. So better to give new foods then, versus for breakfast or evening snack.

New Supporter – his pediatrician

We had a GREAT appointment with our pediatrician two days ago. The man who has up until now has always said that weight is the end-all-be-all of determining health agreed that, although  Henry is not currently gaining much weight, he wasn’t eager to make any changes or do any further interventions. He actually suggested just waiting a bit  and seeing what happens – and we didn’t even have to suggest it first! Plus.. and even better… when I asked him about making Henry’s formula myself,  he thought it was a pretty logical idea and couldn’t see any reason not to try. Finally… someone who agrees!!!! Admittedly, he said he doesn’t know  too much about it, but said he’s do some research prior to our next appointment and see what he could find out to help. Yeah!!!!! I felt like hugging the  man. After being told no by the dietician every time I bring it up, it feels so good to have someone on my side.

Cheers,  Shelley

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My struggle to find help…

This next post is a little history review… I started a journal for myself last month, but am only now posting the entries onto a blog.

April 27, 201

This hasn’t been easy.

When I first thought about making Henry’s formula myself, I figured it would be a challenge.  But I wasn’t counting on the challenges I am coming up against.

I thought it was a “no-brainer” – real food is better than canned food… right?!?.  In my own life, real, whole foods are better than highly processed foods, so why would this not apply to my son too.  Just because Henry eats through his tube, and not his mouth… why should this make a difference?

Therefore, I was quite surprised that not everyone agreed.  When I talked with his dietician  I was shocked to hear her say that she thought the formula was better.  We had only met her once before.  Henry has received expressed breastmilk (EBM) through his tube since just after birth and other than the first few weeks, he had always gained weight well.  We worked closely with our pediatrician and Henry thrived.  We met the dietician once during one of our appointments at the neurology clinic. We didn’t have any pressing questions… it was more just to meet her for future reference.

As I was saying… I was shocked that she didn’t agree. I just couldn’t understand why she would think that… She just seemed to think that homemade formula would be too hard and he wouldn’t tolerate it – but no specific reasons given.  Just… “he won’t tolerate it…”.  When she went on maternity leave and we started with a new dietician, she also didn’t think it was a good idea.   Her reasoning was that the tube manufactures don’t recommend it because of the acid in the foods.  The tube would need to be flushed with so much water, Henry would never tolerate the volume.

A little background here…

Henry has low tone, but no other known conditions that would make a specialized diet necessary.  He has trouble digesting formula when it is too calorie dense (at least that’s what we’re thinking) and he can’t handle large volumes at one time.   These two factors will add to the challenge, but I don’t think they rule out homemade formula all together.  Henry hasn’t been gaining weight too well lately, but he is healthy, well nourished and growing longer like a weed!  His pediatrician just did a bunch of blood tests that all showed he was doing well.  So while his low weight is an issue… otherwise he is doing well.

What I didn’t understand or like was that neither dietitian would even consider adding ANY real food into his formula.  They wouldn’t even entertain the idea.  This is what I don’t get… how can someone who is trained in health and nutrition not think that fresh foods are best?

Having said that, I was somewhat prepared for their response.  A couple of the chapters in the Homemade Blended Formula Handbook talk about this.  It suggestions that since commercial formulas are easier to measure… calories, protein, vitamins, etc… it is easier to know what the child is getting.  True… but if I keep track of what I am using to make Henry’s formula, can’t we also know all the same information.

So… I have decided to forge ahead without the help of the dietitian.  I fully realize this is totally not recommended – and I certainly am not suggesting other people follow my lead – but if they’re not on board, then I’ll give it a go myself.  I’m hoping that if I start and Henry does ok, then maybe I will prove to them my determination, competent and sheer “gumption”… and then they will have no alternative but to support.  (at least that’s my hope!)

Cheers, Shelley

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