untangling this thing we call life…

Monthly Archives: October 2013


Time to sieve the blackberry pips out!

Time to sieve the blackberry pips out!

Amazing first today!!

Little Man cooked his first feed.  He chose the ingredients based on the basic recipe I use…

Beef (he wanted pork because he likes a little pork to eat, but that was yesterday’s meat)

Oats (because he likes flapjacks)

Rice milk and coconut milk (Koko brand) because we ran out of rice milk

Orange and mango juice

Spinach

Forest fruits

Coconut oil

He measured everything out… cooked the oats in the milk and the beef in a frying pan with the coconut oil…

Chose to add in a little turmeric and garam masala (and smelled everything first!!!)…

Put it all into the Vitamix…

Waited…

Then poured it all into a strainer (to be doubly sure to avoid blockages).

I’m so so proud of him!!!  Life skills, emotional development, and knowing that most of taste comes through smell I’m hoping that in time he will be able to taste some of this lovely food he’s making.  The next big test is tomorrow to try and increase volume a little because this particular blend came to 1400mls… he’s never managed more than 1200mls in a day so we’ll see how he goes tomorrow!



The wonder of this little body, that ten years ago came slithering out of mine into the world, and that ten years later I can still gather into my arms.
The madness of this perfect little form that I can still carry with the ease of any preschooler’s mother.
Those quirky little hands that speak volumes more even than the chatterbox who animates them.
Those big blue eyes over a tiny little chin, eyebrows almost constantly surprised, ears elfin adding to that face.

Monday, Tuesday, Wednesday pass and all those little things just fade into the background. 
Thursday, Friday, and his annoyance at not reaching up to that cupboard door disappear as he finds the use of a stool.
Saturday, and the medical appointments, the special school, the wheelchair and the tube are just part of normal, everyday life.
Sunday…

Sunday, or Tuesday, or Thursday…

One day, all that normality vanishes, all the background noise comes into the sharp focus of a melody too strident to be ignored, a song too painful to sing, too loud not to hear.

A little piece of plastic breaks, a part of a wonderful, life giving “button” that allows this little boy to live life largely unhindered by things medical.
That little fault means the button must be replaced.

And then..
The horror of that little face filled with terror.
The beauty of that little face filled with courage, determination and resignation.
The sheer helplessness at seeing his struggle with his fear… “I want to do it Mummy, please don’t touch”
“I don’t want to Mummy, it hurts too much”
The pain is far more feared than experienced, but that fear comes from experience… funny thing our brain, our memories, the sum of our past, our present, our future…
In that moment fear reigns.

He is ten years old, this little boy, and must decide whether to inflict this pain upon himself, or allow Mummy, me, to do the hurting.
And I am ten years old with him, ten years old of Mothering a little boy through various types of suffering.

Finally, two long hours later, he loses his battle.
Or he wins.
He cannot, but he can.  He can let me do the deed.

That little expressive hand, pressing so hard down on mine, to try so desperately to stop the inevitable hurt.  The other hand clutching my other hand.  Tears streaming down his face.
And the sheer horror of excruciating pain as that blessed little button comes out.  How sharp, spiky, hard must it feel when all the muscles are so tight, all the nerves so expectant of pain.

That little body I can hold so easily arches back, and a blood curdling scream breaks out.
It’s all I can do to keep one hand calm upon him, try and hush him, calm him as much as possible.
That hated button stuck – will it come out, is there some hitherto inexperienced problem?
For a moment, the thought comes “must we go to hospital?”
But at hospital, the local one, there is no-one who knows more about this than Mummy… it’s only a week later that I think we could have gone there to use some entinox to calm him, relax and ease the pain.

One last, brief yet endless pull and the button’s out.

How fast did I gather him up to me?
Faster than you can breathe, faster than you can think, faster than you can hope.

I’m shaking, tears held back until he is back asleep, his sister calmed (for screams had woken her, straight into the panic so familiar to a Sibling).
Daddy’s there too, holding and soothing.  Checking on one and then the other.

The next morning all is back to Monday, Tuesday, Wednesday or Thursday.
That little boy just moves on… it was all rather unpleasant but it’s over and part of the norm.
A week later and the music will be in the background once again.
Because in truth, we live a life far more normal than some might think.  All that “special” and “different” lives outside somewhere.

Until the next “Sunday”.
Or Monday, or Wednesday.
Or Anyday.

And Anyday could be today, tonight, tomorrow.

And Anyday reminds us of the wonder of those differences, the marvel that is our little boy, our doctors and scientists, those unknown people who make such miracles as “buttons” and tubes.

For now, I’m back to Monday.  I’m loving that despite being ten years old, his little body still fits snugly into mine, that his cuddles are soft as a cloud and those magical mysterious hands come to move my hair away from my face to allow a kiss in the morning.



Updated picture of Little Man. As of January 2015, all of this information is still accurate.

Updated picture of Little Man. As of January 2015, all of this information is still accurate.

Quick Background: Little Man has Noonan Syndrome.  He has always had severe eating difficulties, never understood, and has been reliant on tube feeding to keep him alive since he was 8 months old.  We tried tube weaning last year, but have now been discharged on the grounds that it was unsuccessful and that there are medical issues that must be resolved before we even think about trying again. When he was three years old, on an elemental feed (a special formula of various chemicals that make up the mythical “complete feed”, with no allergens – even the proteins are broken down to amino acids.  Don’t let the 52% corn syrup in the ingredients put you off – or do, he was very poorly.  Vomiting several times a day, losing weight and all sorts going on.  In desperation I asked the paediatrician if I could try a “blenderized diet” – real, normal food blitzed fine enough to go through his tube.  She agreed. Within four days, he had stopped vomiting.  He had his one and only growth spurt in the weeks following that change, and vomiting is now a pretty rare occurrence. Fast forward to this year.  Because of the failure of the tube weaning, Little Man finally had an endoscopy this summer, and we now have an additional diagnosis to his long list: eosinophilic colitis (I cannot tell you how proud I am that I’m able to pronounce that!!!).  The quick version is that he’s allergic, probably to milk and wheat.  The longer version is that it involves white blood cells not working properly and could be auto-immune.  Added to his history of wonky white blood cells with the leukaemia I’m thinking watch this space. So Little Man is now on a dairy and wheat free diet (did I mention before that all he will eat is potato, pasta, bread, biscuits, yoghurt and cheese??), and more importantly we are now back in the world of dieticians. Dieticians who have been trained following the NICE guidelines on enteral feeding, who are taught the importance of a “complete feed” (one which has ALL the nutrients in the right balance at every meal – just a head’s up – neither you MacDonalds nor your posh restaurant meal will have been “complete”), and who are told time and again that medical feed is the only safe feed for tube fed patients.  The pharmaceutical companies are very much involved in this, after all the only way they sell their feed is through dieticians… And then they meet a maverick mother like me.  I am not alone, but I am a rare enough breed that only one dietician had ever worked with a family doing blended food through a tube before.  For bureaucratic reasons I can’t now work with her… So I need to convince these professionals that while BD is not and should not be standard hospital policy, in this one case, it is not only appropriate, but probably the best thing for Little Man. On the whole she was happy with my blend, but did want to make some tweaks, so I have been doing Food Maths for the last couple of weeks.  I wanted to share in the hope that it might help other families grappling with the same questions. Firstly.  Little Man stands 112cm tall and weighs 21kg.  He is 10 years old. Based on his age, he should be getting approximately 64 calories, per kg, per day:

64 x 21 = 1344 cals per day

The dietician would like him to get 20% of his calories from protein, 30% from fat and 50% from carbohydrates.  This is where the maths becomes a bit of a pain.  Let’s just work it out in calories first:

20% of 1344 = 269 cals of protein

30% of 1344 = 403 cals of fat

50% of 1344 = 672 cals of carbohydrate

All good.  Now the problem is that on food packaging, you do not get given protein, fat or carbs in calorie terms, only in grams.  So now we have to convert those calories to grams.  For protein and carbohydrate the magic number is 4, for fat it is 9.  Exactly why is beyond my scope just now, but I’ve done my homework, and got my maths checked by the dietician, so here it is:

269/4 = 67g protein

403/9 = 45g fat

672/4 = 168g carbohydrate

Yay!!!  Now we are ready to go.  Be careful though.  We often think of meat as protein, as well we should, but 67g fillet steak is not the same as 67g protein…  This is where food packaging, and websites such as http://www.nutritiondata.com come in really handy.

My next job was to compile a data set of foods I use commonly in Little Man’s feed.  Using the websites above, and the packaging, I made a spreadsheet with all the information I needed on it.  You can download it here:

Sheet 2 has all the food ingredients I currently use.  I occasionally insert a new food in there as I find myself using it.  I have not worried about things like herbs and spices, they’re just little bonuses I put in there from time to time.  You’ll see that the top of sheet 1 is a little messy and has a number of recipes at the top.  This is my working table and I haven’t spent hours making it look pretty!!  Those of you who know how to use Excel properly will see I’ve done some fancy grouping and sums – feel free to use and adapt to your needs and find some lovely person like my Darling Man to set up those fancy things that save time in Excel!

Once I’ve got that information, I copy the foods I’m using to a new row, with the amount of each food I’m using.  I’ve taken to cooking the grain in some rice milk as that makes the feed much lower in volume which is a big thing for us.  The totals are made for each column and I record the total volume of the feed in order to calculate the cal/ml ratio.  The following recipe is an example.  Since I’ve been doing this for a few weeks, I’m finding it easier with the help of my trusty Vitamix to get very calorie-dense food prepared, and he’s doing well on it.

Remember those values we worked out?  This recipe has 38g protein (67), 44g fat(45) and 180g carb(168), for a total of 1260 cals (1344).  The low volume of 1100ml gives a lovely 1.15 cals/ml, and amazingly Little Man tolerated this one really well.  I could have tweaked it by adding meat to increase protein (I was working with a bit of mince I had in the fridge), but as I change the recipe each day, he gets a really varied diet and those proportions of protein, fat and carb fluctuate – just like they do in my diet, and yours.

For those of you who noticed the Calcium and Vitamin A columns.  Little Man’s complexion is often very yellow, and a cause for concern.  One of the worries was that he was getting too much vitamin A.  Well – vitamin A ABOUNDS in food!!! It’s absolutely everywhere.  Little Man’s dietician would like him to have ~500mcg a day.  As you can see this recipe is below that.  But a recipe that has a carrot in it jumps to over 1000mcg.  Again, I balance it out over the week, but I’ve found this column very helpful.

Similarly, since Little Man now has to be dairy free, there’s a little concern that he should be getting sufficient calcium in his diet.  And since maverick mum won’t just use a can of formula (corn syrup with added chemicals – I feel quite strongly about this but will leave that rant for another day! ), I had to be sure I was on track for the calcium.  As you can see, he’s getting well over the 500mg daily recommended calcium intake for his age. Anyway, a little note about vitamin A.  Most nutritional labels give the amount of vitamin A in IU (international units)… No use to me!!  Luckily I found a converter that allowed me to input the data into my tables: http://www.robert-forbes.com/resources/vitaminconverter.html This recipe is enough food for one day.  At the moment I’m cooking for him once a day.  I’ve also started reducing his overnight feed by adding two daytime feeds. A little note on overnight feeds.  It causes everyone concern that we should hang a bottle of what is effectively soup overnight.  At room temperature, nasty bugs tend to thrive.  In the past I did wrap Little Man’s feed in ice packs, but for reasons lost in the mists of time I stopped doing that years ago. I blend his food in a high powered blender, my beloved Vitamix, which heats the food up to piping hot – I mean hot enough to kill pretty much anything.  From there it gets decanted into sterile boxes (the ones I would be using if I had to make up powdered formula).  It then gets attached to Little Man’s tubing, so the food is not open to the air at any time.  At all other times, it’s in the fridge, following standard food hygiene. However, the most important thing to realise is day to day living.  I have been feeding Little Man like this for seven years.  Including overnight feeds (good golly do I wish he could do without those overnight feeds!!!).  He has NEVER had a tummy bug, gastro enteritis or anything approaching food poisoning. And at the end of the day, that speaks volumes. I’m hoping to meet a dietician who will work with me as we navigate this brave new world of food allergies, or malfunctioning gut etc…  And I’m hoping that she/he will see that I’m willing to put in the work to do this well. But in the meantime, I know there are dozens of families trying to feed their tubies like this, and I know that recipes are like the holy grail.  I’m not really shouting about my recipes here.  What I hope I’ve done is given you the formulas to work out what your tubie needs, and a little spreadsheet that you can use to make recipes that add up to your tubie’s numbers! Good luck, and enjoy cooking!!  



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