17 March 2011

Today's Appointment

{EDIT: I love this link Lydia left under her comment to this post. I decided to post it for all see. This is a youtube video by Josh, a great guy who has CF and who uses his puppet friend to make kids (of all ages) laugh.  The online CF community has particularly fallen in love with Josh and his videos because of what it means to kids with CF.  It's so wonderful to watch a video that seems to be made *just* for them.  Thanks, Josh, for the dance.  Thanks, Lydia, for bringing it to my attention.}

The first thing we do at our CF appointments is get Bennett weighed.  Thank goodness for that!

As soon as the nurse announced Bennett's weight this morning, I knew our appointment wasn't going to be as horrible as I had anticipated.  In fact, it turns out the appointment went pretty good!

Bennett weighs 23lbs and 11oz.  That isn't too's in the 25th percentile and very close to where he was last month during our last visit with the CF doctor. 

Both the Dietician and doctor were very happy to find out Bennett growing right on his curve.  They had apparently thought he had lost weight when I called earlier this week to request to cancel today's appointment. This is because out of the 3 scales we have at our house, we didn't know how much Bennett weighed.  One scale read "22 lbs", another read "24 lbs" and another something different.

Knowing that Bennett weighs almost 24 lbs is very relieving!  This tells us that Bennett is growing normally and may even be eating enough calories orally to make up for the tube feeding that we have taken away in order to increase his hunger.  This is something we have yet to fully know is true.  We have been changing his feeds alot recently so it's important that we try to keep everything as consistent as possible to confirm he really is eating enough orally to grow.

So, our plan is to continue with what we're doing...
* Morning Tube/Pump Feed, 6.5 ounces of formula
* Lunch Tube/Pump Feed, 6.5 ounces of formula
* No Dinner Tube/Pump Feed (Offer oral opportunities instead)
* Night Continuous Tube/Pump Feed, 19.5 ounces of formula

The only two things we have decided to add (as of today) to do are:
1.) Have Bennett weighed every two weeks at the Pediatricians office
2.) Offer Bennett 3 additional ounces of water daily (either by mouth or through the g-tube)

We will continue with our plan of being admitted into the Baylor Feeding Clinic later this Spring.

I was really nervous about today's appointment.  I had alot of guilt I was struggling not to hold on to.  I had really hoped my desire to cut down Bennett's tube feeds in order to allow Bennett to eat more by mouth hadn't caused him trouble.  So, it was really fantastic to feel the team agreed that what we are doing is good and may very well be working.

I am so thankful for Bennett's prayer warriors who keep him and our family in their hearts and prayers.  I have recently felt God very near and have chosen to fall safely into his arms, even in my uncertainty of what the future holds.

Good days, good visits, healthy weights and happy doctors are all blessings I am thankful for this St. Patrick's Day!  Aye, we're lucky today!  We found our gold at the end of the rainbow!  We're celebrating 23 lbs and 11oz!!


  1. Congrats to you and Bennett for a great clinic visit. It's very exciting that he is going well eating by mouth- I know you must feel proud. Love all the adorable pics of Bennett.

  2. Yay!

  3. Lol, your welcome. I always watch it with Azer after a good CF appointment.


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