21 June 2011


My brain is mush. It's hard to even concentrate. I think this is a pretty clear sign I should be asleep in bed. But I cannot retire to bed until I share an update.

Olga asked a very good question regarding motivating Bennett internally versus externally to eat. I am going to table that question until tomorrow but I will write more. Having my brother in town recently reminded me how important it is for me to really wrap my brain around what we are doing with Bennett. It's a bit difficult to articulate if I don't really understand why we are doing the things we are. So, I will write more about this tomorrow and explain some philosophy behind the method. I am also very interested to hear others' thoughts, questions and concerns. I have gained such wonderful confidence and knowledge from blog readers and those Momma's I have met online. So, I appreciate the questions!

For now, I will just share that Bennett is still doing well.

But we did have a good ole standoff yesterday. Think 15 minutes of crying in the highchair.

He did not want that stupid bite of Mac and Cheese and wanted his father to leave him alone. Eventually, with the right toy, he did end up relenting. (Mind you, he ate 34 grams of Mac and Cheese tonight so clearly it wasn't he Mac and Cheese he didn't like.) We are pretty sure he was just testing his boundaries and eventually gave in. The staff at the hospital warned us of this and just reminded us to stay on course. Kids often return home and pitch fits. This is nothing like it was at home before they came to the hospital and they do not like this new change one bit.

Bennett threw another 7 minute fit tonight. But, again, he relented. I just had to stay incredibly patient and pretend not to hear him.

We also realized this week that we cannot feed him in between meals. The staff had instructed us not to do so. But it's hard to refuse those little puffy cheeks and round blue eyes when all he wants is a bite of our food.  How can I look down at my baby bird, mouth wide open and not feed him? 

But Brian and I feel quite confident that if we don't stop feeding him, even a few bites of our food, between meals, he is going to continue to pitch bigger fits.  He has to know that the only time he gets food is during his meal times.   Otherwise, he could begin to believe that he doesn't have to eat during his meals since Mommy and Daddy are going to feed him later. 

It's hard to deny a child who "doesn't eat" food when all he does is want your food to eat.  But I joke that Bennett had two years to eat correctly.   And since he "chose not to," he's gotta go through all of this work.  And if I'm gonna have to stay on the plan (blend the food, get up early to prepare, feed him 4X's daily for 25 minutes), I figure he should have to too.  The reality is that we don't want to do anything that might sabotage his or our success with this program.  So, if the protocol says not to feed him in between meals, we're not going to anymore.  It will be hard to deny him.  But that's what Momma's do...they keep the bigger goal in mind, even when it means overlooking the temporary one.


  1. Ha ... Azer STILL does that! I realize you are on a program right now. I try to feed Azer when he says he's hungry. But unfortunately, I don't think he knows what hungry feels like. He will be saying, "Mommy, I'm SO hungry. I'm STARVING". I'll feed him what he says he wants to eat ... and he eats so little, I tend to be doubtful when he tells me he's hungry. But then, when I feed him at a set meal time... he'll eat more than he would if he was "starving". I am completely stumped.

    It is going against what feeding therapists have told us. She had always said, feed him what YOU want to feed him. Not what he wants to eat.

    At 7 going on 8, I don't think he's being stubborn when he doesn't want to eat steak, and just wants some soft and mushy mac-and-cheese. I have also got to keep the big picture in mind ... getting this kid to gain weight one way or another! Even if it does mean getting him a cheap, cheese pizza every other day!

    I bet you have no idea that hearing what you are feeding Bennett is helping Azer. I have been feeding him easier to chew and swallow foods, and he is eating more at each meal!

  2. We weaned over a year ago. I guess you could say we started when Zander was 16 months old and finally passed a swallow study. He’d had nothing by mouth since 8 weeks of age due to insanely severe aspiration.
    As a family, we love good, fresh food. We used to dip his pacifier in flavors from our plates and find things for him to gum on. Later, when he was still not safe to eat but wanted to sooo badly, one of us would play with him while the others ate. Oral intake started with water in a bottle. He gagged/vomited on Pediasure, so that was out. But apple juice in a juice box was a hit! We searched for other “juice boxes” and found Neocate’s Splash. Voila! He loved it, and would drink about 50mL a day.
    So When do kids eat? When they are hungry! Unlike many adults, kids (with some exceptions!!) eat when they need to. The answer for me was to give him “room” to feel some hunger, and connect the dots that eating/drinking would make his tummy feel better.
    We started by cutting out the 30% of overnight calories. Within a week, he was drinking that 30%.
    At mealtimes, I would hold him on my lap, with full access to my plate, and bolus feed him while he played and even tried food. All this time, we would be ooh-ing and aah-ing over how delicious things were. It made him curious! It also helped that he has a sister who is 3 years older. I would give her a snack, and hand him one, too. He would gag on crumbs at first, but we had great success with crunch-and-melts with cream cheese, shredded cheddar cheese (shredded at home), soft cooked pasta, and … chocolate! You bite it, it melts, and it makes your mouth happy! We brought home lots of things for him to try.
    I always thought of him as having two ages: his calendar age, and his eating age. When he was 16 months old, his eating age was 8 weeks, so that of a newborn. My expectations matched his “eating” age, not his actual age. If he gagged on a food, we would gently take it away, and reintroduce later so that he wouldn’t get scared.
    (part 2 below)

  3. Part 2:

    There was never any forcing, never any bribery, never any power struggle. I just wanted my boy to love food, to be excited by it, to ENJOY eating. I felt that giving him a chance to know what it meant to have an appetite was the way to go. I didn’t want any therapists or a clinical setting.
    Once we got to where he was eating 50% and getting the other 50% via tube, we hung out for a few months and he built up his skills. I felt stuck. What now? One person told me had lacked the oral motor skills for a full wean. But then, two moms gave me the wild inspiration to just… drop the tube feeds and see what happened. When I got back from talking to them, my husband had not given Zander his afternoon snack. We went to my parents for dinner, and I decided not to tube him. And… HE ATE. He ate corn, he ate green beans, he ate fish, and juice, and his formula, and bread, and asked for more. And that was it. The last tube feed. Over the next 4 weeks, his intake would swing from 650mL to 900mL, and I was often on the phone with my OT hero at Seattle Children’s, who reassured me things were perfectly fine. He was not dehydrated, he was self-regulating, the way a normal kid does.
    Initially, he would graze all day. But that, too, was OK. Meals and “manners” would come later. He was just learning the eating bit, learning to recognize the rumbling in his belly as a signal for food, and learning to respond to it. He always had access to water and formula, and I would offer snacks regularly, in addition to meals. At first, he loved home-made French fries. So fries it was! Later, we started tightening the schedule to meals, and not giving unlimited quantities of fries. But at first, I felt it was key to fuel the joy of eating while he learned.
    I think the familiar comment that the child is “choosing” not to eat is unfair. If they have not known appetite, the connection to food is lost. It is hard to say that you are choosing not to eat when you are already quite full, thank you.
    4 weeks after the final tube feed, and 5 months after his first drink, we removed the button, at home (with our pead’s OK). Our wean, while stressful for me, was for him exploration, without fear, without withholding of my love or affection. Anytime he expressed interest in food was a success for us. I would call my mom with daily news: he tried a spoonful of soup! He nibbled on some green beans! It took him over a year to like anything with milk or a mushy texture. But that’s OK. Mush is not mandatory, and for many kids, controlling purees in the mouth is hard to do and thus scary. Straws work for many, as the stream of liquid is easier to manage.
    Today, he cooks with me, will try anything, and eats *meals,* even with baby chopsticks. Pad Thai was one of his first phrases.
    I wish you the best in your weaning journey. There are many ways to go about it. I hope that you find a way to help your boy eat and still hold on to your valuable and valid mother’s instinct and love.
    All the best, Olga in Seattle

  4. p.s. sorry for such long posts! but i felt like it was ok to share our story, in light of your post above.
    - olga


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