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A familiar scene

It finally came. The day I’ve been trying to avoid for months. The appointment with the dietitian.

At our last appointment, more than a year ago, I had been told that if Deane didn’t gain close to 10 pounds, it would be time to look at a g tube.

I’ve written before about our – mostly futile – attempts to fatten up our son (Weight crisis). So I had been dreading this appointment and the conversation I was sure I was not ready for.

The appointment began by taking Deane’s weight and height. This didn’t tell me much because I’ve only begun tracking his weight this fall. I didn’t know what he weighed at our last visit with the dietitian.

When the doctor finally came in, he told me that Deane had grown 10 centimetres  and gained 3 kilograms since our last visit. My basic metric conversion was fast enough to tell me we hadn’t hit the magical 10-pound mark.

We talked about how many glasses of milk – homogenized? Three cups – he drank a day. Were we giving him vitamin D? Yes. A multivitamin? Yes. Had he had his flu shot? Yes.

Well, the doctor said, he is at 82%. He’s dropping. Last time he was at 88% and the time before that he was at 95%.

Eighty-two per cent of what? I had come ready to discuss the difference between standard growth charts and those adjusted for children with cerebral palsy. I had a list of everything he had eaten for the past three days. Eighty-two per cent? I was lost once again.

It turns out that they were measuring his weight based on what was appropriate for his height. So growing 10 cm without significant weight gain had actually set us back.

I was expecting it, but there was no discussion of g-tubes. All that anxiety for nothing.

The doctor began on a well-worn script we have heard at every visit.

Doctor: What about olive oil? Have you been putting olive oil on his food?

Cue my response: I’ve tried but he drinks with a straw and the oil floats to the top.

Doctor: You have to mix it. Try it on his cereal

Mother: silence. (I do mix it but it separates again. When you put milk on the cereal the oil again floats to the top.)

Doctor: Do you know about Carnation Breakfast Essentials. It is better and cheaper than the other fortified meal replacements. And it comes in three flavours – vanilla, chocolate and strawberry.

Mother: (on autopilot) Deane does not like these heavy artificial flavours.  Nor does he like fruit.

Doctor: Try mixing it with yoghurt. Does he like ice cream? Make him a smoothie in the morning. Come back and see us in three months.

End scene.

That night, with all the familiar suggestions fresh in my mind, I made Deane a dinner of salmon with cream sauce, cauliflower and naan with olive oil and cheese. All topped with powdered extra calories.

But Deane, who had been dozing in front of the TV, could not be convinced to eat it. He had Tim Bits for dinner.

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Discussion

4 thoughts on “A familiar scene

  1. So sorry y’all are having trouble getting Deane to gain weight. DON’T GIVE UP! I started support group on Facebook – CP and ME . Maybe some of the people on our page can lend you a hand and ideas,

    http://www.facebook.com/cerebralpalsyandmesupport

    I will be thinking of you in this challenging time.

    Brooke

    Posted by Babbles from Brooke | December 11, 2012, 1:56 pm
  2. Oh my goodness! I could feel myself tightening up as I read the first few sentences! I just wrote a comment on BLOOM about using regular growth charts for kids who aren’t regular (please excuse me while I scream):

    http://bloom-parentingkidswithdisabilities.blogspot.ca/2012/12/lets-rethink-normal-in-childrens-rehab.html

    I remember the first time they had us put Ben on a high-fat diet — he was a toddler and he had cream and butter in everything — I think his bottles were half cream — the whole family got into it — so when he went to my parents they were fattening him up and all we did round the clock was fatten him. Then we went to the appointment, thinking we had done such a good job, and the specialist said he’d gained 1/2 a pound. I remember getting into the car and hot angry tears ran down my cheeks — while my mom, who had come to help said, “But how could he only gain 1/2 a pound? Think of what we’ve given him. They must be wrong!”

    Does Deane look unhealthy? He’s never looked underweight to me. What is the end goal of these doctors? Some kids just aren’t going to grow like typical kids — no matter how high-fat their diet or whether they’re put on a g-tube (when Ben went on the g-tube he stopped eating during the day — why would he be hungry when he was tube fed all night?)

    But really — what is the goal? In 10 years, are you going to be having the same discussion with a specialist who gives you all the same tips or tells you it’s time for a g-tube? What do they want to see in our kids? How is this improving our kids lives? How would Deane’s life be different right now if he was a few pounds heavier? In the meantime, it creates mass anxiety for parents and makes them feel unsuccessful.

    Good job Deane. I remember you liked those Tim Bits when you participated in research at Holland Bloorview — I would have taken them too!

    Posted by louise from BLOOM | December 11, 2012, 6:27 pm
  3. Timbits for dinner. Sounds familiar. This is why Deane and I get along so well.

    Posted by Ali | December 12, 2012, 1:09 am

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