27 September 2011

Bennett's Eating

I put a call in to our CF Dietitian yesterday.  My question: "Is Bennett really ever going to eat??"

We are all trying to hard to get him to eat.  We are regularly feeding him with the behavior modification feeding protocol we learned at Our Children's House at Baylor.  We are in touch with them several times a month to find out ways we can continue to improve what we are doing.  But things feels so frustratingly  s l o w.

"Maybe, maybe," I thought, "Bennett isn't eating because he's just not hungry.  Maybe it is the Cystic Fibrosis keeps him from being hungry."

Day after day, meal after meal, toy after toy, we continue trying but it seems like Bennett is either staying the same or regressing from any progress we made back in June.

"Is Bennett really ever going to eat??"  

This wasn't my first time to ask this question...and it won't likely be my last.  But asking it to the dietitian yesterday was my effort to reassure myself all of this effort will be worth it in the end.

Her response? "I can't tell you if it's worth it or if Bennett is ever going to eat."  But she said, "the one thing I can tell you is you are doing everything you can."

The dietitian explained what I had heard many times before: every Cystic Fibrosis patient is different.  Could he gain a greater sense of hunger at some point?  Possibly.  Will he never fully gain the skills and desire to eat?  Maybe.  We just don't know.

"Is Bennett really ever going to eat??"
I want the answer to this question.  I want to know all of the effort we are putting in matters.  I want to know that his eating battle is a one-time thing and something that will eventually go away.  But I am becoming less and less convinced that this will be the case.

Will we end up having to return to tube feeding him full time?  Bennett hasn't significantly lost weight yet but he's not gaining either.  So, we are just continuing to watch and wait.

Honestly, I haven't really envisioned what it would look like to have a grown up child who never really eats.  What will it be like at school?  What will it be like with his friends?  I won't resign ourselves to this quite yet.  But as time goes on, the less hopeful I become.  We are doing everything we can.  And if this doesn't work, I'm not sure there is anything else we can do.

But as the CF Dietitian reminded me on the phone, "it's hard as a Momma to have a child who doesn't eat.  But as long as he's healthy and happy, that's really all that matters."

She is right.  I'm sorta bummed that things are different in Holland.  But I must remember that just because something turns out differently than I expected, doesn't necessarily mean it's bad.

We are on month 4 of our one year commitment to carry out the methods at Our Children's House at Baylor.  We will continue our efforts and re-evaluate whether this is working in June 2012.  We have a long way to go still so things could change.  But I did need a bit of a "pick me up" from our conversation with the dietitian.  I feel like I got it.  Only 8 more months of this to go!


  1. Breck, I say this only as a little hopeful yardstick you can use to enhance your attitude. Daniel is almost 26 months and I feel like I ask the question, "Is he ever going to really eat?" all the time. I know my son doesn't have a condition that precludes normal eating, but he is two and a boy who is easily distracted by nonfood things. I hope one part of this for Bennett is developmental and you can attribute to his gender and preferences for doing more fun things than eating... like playing cars!

  2. You're doing great, Breck. Hang in there!!

  3. First of all, Happy Belated Birthday!

    Wow ... yeah, I've been told the same exact thing by our CF dietitian. I had been concerned because ever since we got the G-tube last year, he has been becoming more and more dependent on it, and sometimes to the point of not consuming meals some days. She had said that as long as he's happy, healthy and growing, that's what it's there for.

    Still, it is odd having a child that doesn't really "eat".


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