11 December 2011

Feeding Protocol

One of the greatest Christmas gifts to our family this year is Bennett's continued feeding improvements.

It was the middle of the summer that we are at the Baylor Feeding Clinic desperate to get Bennett weaned from his g-tube and eating age-appropriately.  And now, sitting 6 months later, Bennett is eating every meal on his own...often asking for food before we have a chance to realize it's dinner time...and asking for the very sandwhich in our hands.

We have stopped using the Baylor Feeding Clinic protocol all together.  There was a time several months ago when things were looking very bleak.  I was becoming very discouraged and wondered if we would ever find our way out.  But, the combination of feeding therapy, the behavior modification protocol and our GI doctor's decision to cut down Bennett's g-tube feedings seemed to help put Bennett over the hump.

I will admit I am still nervous.  Bennett has a GI appointment in January where we will get an official weigh-in.  The few weight checks that we have done in the last month have shown he is not gaining weight as rapidly as he should be.  But, he is not losing weight...and he is eating.  The question is, is he eating enough?

Cystic Fibrosis is a terrible long-term disease that will be a constant battle for us, no matter how hard we fight it.  (As my fellow CF mom says "Despite your best efforts…it still is hunting you down and trying to destroy you.")  So, daily, I am having to learn how to release control.  In the area of eating, I am just giving up control and trusting that if Bennett is not gaining enough weight, we will address it when we get there.

While my hope is that he will eventually be g-tube free, I am also willing to resign that if the g-tube is what keeps him growing healthy and keeps him on this earth longer, I am willing to embrace it fully.  I want his eating to be as physically and socially healthy as possible.  But sometimes, health has to be categorized between what is most important.  The social aspects (or lack thereof) of eating can be dealt with over time...but the consequences of a child being underweight and sick cannot. 

My goals with Bennett's eating and CF are:
Keep him alive.
Keep his lungs healthy.
Keep his body growing and weight up.
Keep him enjoying food.
Keep him eating on his own.
Get him off the g-tube.

I finally came to the point this fall where I'm ok with the first three goals...even if that means giving up on the last three.  Fortunately, we've been able to hit 5 out of the 6 so far.  Let's hope our next weigh-in proves this to be true.  And my wish for next Christmas is we can hit all six!!

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