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Crazy-Happy!

Monday, February 28, 2011

No news is good news!  A quiet few days on the blog means a crazy few days for our family!

Here's a few highlights of our weekend...shattering the screen of my cellphone on our concrete porch, a fabulous night with friends, some special momma-only shopping time for me, a meeting with several Waco team leaders to plan this year's local Great Strides walk, getting pulled over by a cop for a broken tail light and a quick out of town day trip.

Fortunately for all of us, we're back to our much slower pace this week.  The routine of our Monday-Friday schedule can sometimes be a bit of a haven when our weekends seem to spin out of control.

However, that is about the only thing that is out of control right now.  Bennett's CF symptoms and issues continue to stay in control, which is awesome!  We don't take good health for granted around here.  Everyday that is a good CF day is a celebration in our family!

And to add to that joy, Bennett has begun to eat alot (for him) of solid foods these days!

About a week ago, we began working with a Dietician from ECI who has joined up with the work of our speech and occupational therapists to guide us on how to begin the g-tube weaning process.

We know that the more that we can do now, in the way of getting Bennett to eat by mouth, the more success we will likely have at the Baylor Feeding Clinic.  So, we got the thumbs up from our CF team to begin to have Bennett monitored closely and start the process of cutting back his feeds ("feeds" refers to his 4 separate feedings, 3 hour-long feeds during the day and one long continuous feed overnight).

Last Monday, we began by feeding him one less "feed" than normal.  So, during the course of the 24-hour day, Bennett has now begun taking in 47.5 ounces of formula instead of his normal 57 ounces.

To start with, we began tracking his eating habits and interest in food.  Then, we began charting what we gave him.  (We also used several tips from CF momma, Marchet's recent blogpost.)

We saw his interest in solid foods almost immediately.  (Previous to this, Bennett might take a few bites here and there.  But most of the time he didn't want anything.)  And within 3 days of having cut back his "feeds" last week, we noticed Bennett wasn't just eating often but was eating well!

In fact, the only time Bennett seems to stop eating is when he is full.  It doesn't matter the type of food, type of texture or time of day.  Bennett will now eat it!  He is drinking too!  It's incredible to see a child who has taken almost nothing by mouth begin to shove things in his mouth!

His eating so well tells us a few things...

1.) Bennett has the necessary skills to feed himself.  He can chew correctly and, when given the opportunity, does have a sense of hunger.
 (Some very young tube-fed kids fail to learn the basics of eating when they are not given the opportunity.  And children who are tube-fed can sometimes fail to recognize the body's hunger signs either because they've never known what it's felt like or simply don't get them.  Children who are tube-fed regularly may not feel hungry because their bodies get used to a tube-feeding schedule and do not need to anticipate being hungry.)
 
2.) Bennett doesn't necessarily have a problem with textures or tastes.  This is something his therapists have been trying to sort out.  Why does he refuse foods?  Are certain foods preferable or disliked?  The answer is he seems likes everything and only refuses when he's not hungry. 


3.) Bennett has all the signs he's not only ready for the feeding clinic but he's going to do well.  As long as Bennett doesn't get sick, he's likely to do just fine during the weaning process.  It seems that his only obstacle will be helping him to eat enough to gain weight as the tube feedings are weaned.

Recently, Brian and I have considered if the Baylor Feeding Clinic is necessary.  We've wondered, "Could we actually do this at home?"

The answer is, yes, we can potentially do this at home.  If we continue to see success, there is a good chance that Bennett could actually go tube-free or even day-time tube free before even going to the clinic.  This might even determine that he doesn't need the feeding clinic.

But there are many things to consider before we cancel our spot there...The first and foremost issue is making sure Bennett gains weight.  It doesn't matter if Bennett eats all day, if he doesn't gain weight, he will have to be tube-fed again.  The second issue is how Bennett will do when he gets sick.  Like most kids when they are sick, Bennett tends to be less interested in food.  We will want to monitor closely how to help him through periods like that.  Any type of illness could set us back and force us to rely more heavily on the g-tube.

We are not too focused on getting Bennett off the tube completely.  We appreciate what the g-tube has to offer and feel confident that we will need to use it throughout alot of his childhood (esp. during his sick times).  We would just love to see the g-tube be used for nighttime supplemental feedings - to provide extra calories - rather than to take the place of actual daytime meals.  If we can get Bennett to a place where tube feedings are just at night, we would be thrilled.

We will meet with the ECI Dietician tomorrow to report to her how Bennett's feedings have been going. We will also get an official weigh-in on him to make sure he's gained weight this week (it's very important for his growing body and even more so since he's only in the 25th percentile for his weight - 25 percentile below where we want him to be).

If everything is on track tomorrow, we will cut down on an additional feed so that Bennett will be getting only one daily feed and the rest at night.  Our short term goal is tube-feeding him 40 ounces and making up the rest of the calories (340 of them) via solids.

I'm praying tomorrow will bring good news.  But I am also just estatic about the present.  To have Bennett happy, laughing, growing and eating even for a week...it makes the rest of life just details!

2 Responses to “Crazy-Happy!”

  1. What wonderful news, Breck! I'm so excited for y'all!

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  2. Yay! Sometimes I forget how much Bennet is on the tube during the day. I'm sure it will be a huge blessing if he would only have to be fed during the night. I'm praying he continues to grow and gain weight on his own! Azer told me last week that even if he eventually gains weight on his own by eating food, he said he would keep his G-tube "just in case, Mom".

    And YEAH, every good CF day is an awesome day!

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