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Bennett's CF Appointment

Friday, March 9, 2012

My friend Teresa said it best when she said going to a quarterly CF appointment is often like "going to the Principal's office and wondering what you did wrong this time."

I was worried, going into yesterday's appointment.  But I left fairly pleased.

First, we addressed his lungs.  Bennett's lungs sounded clear, which is wonderful.  No signs of any lung issues yet.  We did decide to add the daily use of Hypertonic Saline to help continue to keep his lungs healthy.  

Bennett is learning to be more and more brave when it comes to his doctor appointments.  Dr. Cannon is particularly patient when it comes to her littlest patients.  (By the way, no worries, we use the pacifier as a soother since our appointments can be very long and stressful.  But, we're planning to pull the plug on it at three no matter what. :))


Bennett does tremendously better if he has a stuffed animal go first.  When we asked Dr. Cannon if she would mind checking Mr. Fox's ears first, she said, "Sure, I haven't checked a foxes' ears yet today."

Of course, the most important thing on the list the doctor wanted to address was Bennett's weight.

As I expected, Bennett weighed 28 pounds yesterday, the same he's weighed since August of last year.  That's eight months of virtually no weight gain.

Currently, Bennett is in the 30th percentile for weight and 11th percentile for height.  The concern is that his body is simply not growing.

The "X"'s represent Bennett's weight check-ups.  He went from the 50th percentile in August to the 30th percentile in March.

This is a poor photo of Bennett's growth chart but it shows how he is "leveling out" with his weight (which, for a child who needs to be growing along the curve, this is like losing weight).

We discussed what Bennett was eating and why he wasn't gaining enough weight.  I have been very concerned that Bennett's lack of eating is why he is not gaining.  But I was so relieved when Dr. Cannon said, "he eats like a totally normal toddler!  He grazes, eats a few bites and moves on.  That's completely normal."

What isn't normal is that Bennett (like all CF toddlers) needs 2,000 calories per day, waaay more than a healthy two year old.  So, I learned, it isn't so much that his eating is an issue, it's his body's need for so many calories that is an issue.

Who would ever think these cheeks weren't getting enough food in them?  :)
Dr. Cannon suggested that the way we address this problem is by increasing our nightly g-tube feeds, something that is fairly easy to do.

I voiced my concern that if we start increasing his g-tube feeds, Bennett will slowly stop eating (forcing us to use the g-tube even more).  But the doctor and dietitian both explained they expect to do everything they can to prevent that from happening.  They both encouraged me to wait and see what happens with Bennett and to allow us to address it when it does.  Bennett may eat less.  Bennett may eat the same.

Either way, Dr. Cannon said she didn't think this was a good time to restart the feeding protocol.  (Hallelujah!) She felt that we need to make meal times fun and not stress over how much he is eating.  The reality is, he is eating enough for a child his age, just not enough for his disease.

In addition to increasing his feeds, we are also going to start giving him nutritional supplement juice drinks during the day in lieu of the apple juice he enjoys.  We hope that a Pediasure-like drink can give him more calories on a daily basis.


I cringed to watch Bennett play on the clinic floor.  But it's almost impossible to expect him to stay off the floor when we're stuck in the room for more than 3 hours.  (The empty wrapper is the chocolate candy I gave him while we waited.  He loves himself some Hershey's chocolate!)

Since this was our quarterly visit and not an annual visit, the throat culture he was given (envision a cotton swab briefly placed at the back of your throat) but he was not given any other invasive procedures.  We do our annual x-ray and blood work next visit.


Our loot: nebulizers and masks for breathing treatments.

Outside of the doctor, social worker and dietitian, we also met with the respiratory therapist who gave us some new masks, nebulizers and tubing for us to use until we return to clinic.  It's always fun to go home with "goodies" as a parting gift from Clinic.



So, overall, we had a very good visit.   I am pleased to know that we aren't going to have to change much to begin the process of pushing Bennett's weight up (we'll increase his tube feeds by only 200-300 calories at a time and hope this helps).  I am pleased we continue to go day after day with not yet one lung infection (I consider him incredibly blessed!!!).  And I am pleased that, for the most part, Bennett had no tears at this appointment!

Our big boy earned two Batman stickers for his bravery for which he was very proud.
Lastly, I asked Dr. Cannon about a new medication that is currently in Clinic Trials that might benefit Bennett.  I was glad to hear there is a good chance it might.  I will post more on this later.  But learning this information was like the silver lining in a dark rain cloud.  I am not letting myself get too excited just yet.  But it's starting to really hit me how really close we may be to a "almost-cure" for Cystic Fibrosis.  Will share more about that soon...


2 Responses to “Bennett's CF Appointment”

  1. He looks incredible Breck- those cheeks look full. :) Cuter by the day! Nestle makes a drink called "Resource Breeze". It is made by Boost. It is a clear supplemental drink and comes in citrus and wild berry (takes like strawberry THICK kool-aid). It is expensive but we ordered it from the Nestle website. Madeline also loves apple juice so we figured she would like this...(but not as much as those high cal shakes!) They come in the form of a juice box and have grams of protein and 250 calories. Glad that those lungs sound good!

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  2. God Bless your son. I too have Cystic Fibrosis and I can just think of when I go to my check ups. When I was Born, my mom was told I wouldnt live past the age of 16 years old. Im not 17 years old and one of the healthiest patients my doctors office has. Recently I experienced a huge miracle, On the breathing test, i ranked a bit lower (due to avoidance of treatments and lung scarring, it was like 92% on the blow test), so i talked to the doctor and i was told that it would be very, very unlikely to get over 100% on my next test, he said it was probably impossible. So i worked hard and started working out and doing my treatments. My next visit, I ranked 104% and he said my lungs were as good as the healthy kids in my class (probably one of the healthiest). Huge miracle, which i thank God for.

    One word of advice, never, ever not have your son do cardio. My mom made me quit soccer, due to my grades. That was a huge mistake. So if your son joins a sport as he gets older, never threaten to make him quit due to grades. Always encourage him to be in sports, and try to have him in sports as much as possible. Even if he has bad grades, take away another thing he likes, but never take away something like cardio. When i was in soccer, i was the healthiest ive been in my life. then everything went downhill when i stopped. Okay, sorry for that 'lecture' i just wanted to tell you what happened with me (hopefully i made sense, overall, make sure he plays a sport or exercises a lot, for the rest of his life, and make sure he stays on top of his treatments, even when hes my age :) haha).

    God Bless you and your son, and thank God for insurance on Pulmozyme haha, we used to go through a company called Gentech for a discount

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