28 October 2010

Yearly CF Appointment - 2010

Our appointment went great today.  Bennett weighs 21lbs, 3oz and is in the 21st percentile.  The CF doctor is happy that he's "riding his growth curve."  According to Dr. Dambro, Bennett's chest x-ray "looks the same as last year" (a.k.a. no changes/no new progression of lung disease).  Bennett's blood work showed no problems.  We will hear the results of his throat culture in a week.  There are no new changes to his enzymes so we're going to just keep on keeping on.  No changes=Happy parents!!

When we go to the CF Clinic, our appointment usually takes about two hours since have 5 different people we meet with (doctor, nurse, social worker, dietician, respiratory therapist).  This was our corner of the room today.

My "work desk:" my notebook to keep notes, a book to keep me busy, my cellphone for human contact, Bennett's applesauce and wipes.

My list of things to talk to Dr. Dambro about.

 Bennett is such a trooper.  These days are long and even more difficult when you can't take a nap.  Today was made worse as Bennett was poked for blood three times (the maximum times allowed by the clinic) and held down for an x-ray and throat culture.

Thankfully, he perked up once he got something in his tummy.  A stroller is an amazing contraption during these appointments.  I consider it a suitcase (since he carries all of our stuff), highchair and playpen all in one!

G-tube Spill Prevention...Finally!!

Finally, I think we've figured out how to keep Bennett from being soaked by his gastric tubing at night.  This post is probably more technical and for those folks who find g-tube talk interesting (usually those are the ones who have a kid with a g-tube).

Bennett takes the equivalent of three 8.5oz bottles through his feeding tube over the course of 12 hours each night.  However, every few nights Bennett's tubing seems to come apart (which covers him with formula!). 

We have been using a little plastic piece called the AMT clamp which has done a nice job holding the end of the feeding bag (red) with the Mic-key extension (the purplish piece with the extra valve which connects Bennett's feeding bag into his belly) together at night.

However, as wonderful as the AMT clamp is, it has not done very well in way of preventing the Mic-key extension valve from accidentally opening up and allowing formula to go everywhere.  

In fact, we used to think using the AMT clamp would prevent the clamp from opening (see how the AMT clamp covers the valve in the picture above).  But after nights of continuing to find Bennett swimming in formula, we realized our only option was to tape it the valve.  Unfortunately, though, tape leaves a sticky residue which made covering the value not worth it.  (The Mic-Key extension, which has the valve, has to be used four times a day for 7 days.  Therefore, that's alot of time for stickiness of tape to build up and become very annoying.)

We were pretty much at a loss as to what to do until a few months ago when we watched the show Pitchmen on the Discovery Channel.  In one episode, they talked about a new product on the market called, "Mighty Fixit."  Mighty Fixit is a sort of water-proof plastic tape-like product that sticks to itself but does not leave a sticky residue.  We are not ones to buy "As Seen On TV" products but after searching high and low (aka Lowes, Home Depot, Walmart, etc.) to find something similar to Mighty Fixit and coming up with nothing, we decided to order this stuff last week.

We have been very happy with it!  It's fairly inexpensive ($10 for three rolls) and works like this.  We just roll out a small section out and cut it.  Then, we stretch it over the tube (including the small valve) and roll the tape onto itself.

Within minutes, the tape starts sticking to itself and holds in place.  As matter of fact, the only way to remove the plastic tape is to cut through it.  But we love that!  The tape is waterproof so if there is a spill, it won't ruin.  It's not sticky so we can continue to use the Mic-Key extension (which we have to use for 7 full days before throwing away).  It's super easy to use and works perfectly!

We have tried to use the Mighty Fixit to hold the two tubes in place (in lieu of the AMT clamp).  However, we have found that while it works like tape, it doesn't seem to be strong enough to prevent the two large tubes from detaching.  We recommend using Mighty Fixit and the AMT clamp together.  We feel we have finally found a way to keep Bennett clean and dry all night!  For a momma and daddy who are tired of having to change their wet formula-soaked baby in the middle of the night, we couldn't be more tickled over this "As Seen On TV" product!  And we're sure that if Bennett could talk, he'd say the same thing!!

26 October 2010

Bennett's First Word

He mouthed it yesterday after I identified the toy the was holding.  But I wasn't really sure that he actually said it...

...until today...

The physical therapist was trying to show him how to throw.  She handed him the toy and said, "Would you like this?"

Bennett reached out and said, "Ball!"

It's official.  "Ball" is our little man's first real word.

25 October 2010

Update on Bennett

Bennett has an appointment with his CF Clinic in Fort Worth later this week. We will also be meeting with his Pediatric Surgeon to make sure all is well with his g-tube.

Here are a few things we are anxious about (therefore, these could be made into prayer requests) regarding our appointment:

1.) Bennett's weight. Studies show that children who stay in the 50% percentile for weight do better with their overall CF health. So, we are obviously hoping that Bennett's weight is near 50% at our appointment. 

2.) We will be discussing with the doctor and dietician ways to begin incorporating more food in Bennett's diet.  It is the very very beginning of the weaning process.  We hope to get a grasp on how to help him get as many calories as needed but also begin to eat more on his own.  We will be learning more about how to dole out enzymes based on the food's fat content.  It should be interesting.

3.) Once a year, the CF team does a battery of tests (bloodwork, throat culture, chest x-ray, etc.) to document how a patient is doing.  The results of the tests are compared yearly to monitor how CF is progressing.  Bennett should be going through these tests this week.  So, we are hoping he will get a good report.

On the topic of prayer requests, we'd like to offer another family who could use prayer.  We don't know this family personally (although they live in Waco).  They are friends of a friend and we have kept up with them through their blog "Keeping Up With the Parker Family" @  This sweet family has a little girl named Leah, who is Oliver's age and who is on the transplant list to get a new heart.  We certainly know what it's like to watch your child suffer so our hearts are with them as they go through this process.

Breck's Thoughts: Asleep

One of my favorite moments of Bennett these days is bedtime.  When he's asleep.  In his dark room.  His feeding pump light glowing over his crib.  Sleeping with his knees under his tummy.  Douglas, his favorite stuffed dog, buried deep in his arms. 

There is nothing like hearing Bennett's laughter or watching his eyes light up when he sees me walk into the room.  But there is something particularly peaceful about watching Bennett asleep.

I think deep within me, the reason Bennett asleep in his crib is one of my favorite moments is because I believe, if even falsely, it is when Bennett is most safe.

When Bennett is tucked into bed.  There are no germs to catch.  No treatment/medication to be administered.  No therapy to experience.  No doctor to visit.  No weight to check.

I don't worry when Bennett sleeps.  This is when my own heart can rest.

Almost every third night, Bennett wakes up in the middle of the night crying.  There are a number of reasons for this.  But lately, Bennett has woken up because his feeding pump tubing has detached and caused his formula to run out on his bed.

We have tried numerous ways to prevent this from happening (most recently ordering a special type of tape that we hope will work better) but we've continued to, at times, find Bennett curled in a ball wearing formula-soaked pajamas.

It's heartbreaking to find our little peanut in soaked pajamas, knowing he had to have been doing so for hours.  He always seems to cry when they are soaked, not when he first starts to feel the trickle of the formula from the detached tubing.

But each time I wake up in the middle of the night to find this situation, I feel Bennett's moments of safety are violated.

I feel horrible as a mother, that my child has been "swimming" in formula for a few hours while I was fast asleep.  I feel horrible that my son who desperately needs every calorie ends up missing out on a much needed feeding.  I feel horrible that Bennett has to be "hooked" up to the pump each night, unable to fully relax or move about his bed as I'm used to doing myself.

Those moments at 6am, my heart breaks.  I am reminded that even his little bed isn't really a safe-haven from Cystic Fibrosis.
But we have hope it won't always be this way.  Things have already greatly improved in the last 6 months and we expect that to continue.

We use the words "CF" and "Cystic Fibrosis" less in our vocabulary than we did even a few months ago.  My google searches on the topic have slowed down considerably.  No longer do we feel our lives are hung between doctors appointments.  Just the other day, I met a new friend and did not feel compelled to share anything about my son's illness. 

Cystic Fibrosis is a progressive disease.  Things may get better but things always get worse...which is why any reprieve from CF - even a few hours a night...or a few months of a year...or few years - is a gift.

We hope a cure will come before we see "worse" for Bennett.  But for now, I don't focus on that.

I focus on the stillness of a nursery.  I focus on the soft glow of Bennett's Winnie-the-Pooh nightlight.  I focus on my baby, fast asleep.

22 October 2010

Bathtime Fun

Bennett loves playing in the bathtub.  The water just cracks him up.

We started to post a video of him in the tub where you can hear his belly laughs, but realized a video didn't fare as well as a still photo in the way of not showing his birthday suit to the entire world.

So, we opted for just a few pictures of Bennett playing in the bath.  We had to delete most of the pictures we took because they were blurry.  Bennett really enjoys "swimming" (or crawling/slipping) from one side of the bath to the other.

Standing up on the side of the bathtub.

Peering over.

Mom is clearly bored at this point as it was her night to watch Bennett take a bath so she found it a perfect time to "play photoshoot."  At this point, Bennett lost his interest in water and was more curious as to what his mother was doing.

No worries, the fun never ends when it involves water!

20 October 2010

Spring 2010 Pictures...Finally

These pictures were taken by a local Waco photographer in April earlier this year.  Bennett is about 7 months old in these pictures.

(It's taken this long to get the digital copies of the pictures because we wanted to purchase all of them - how could we pick just one?! - and because we paid for them by taking CF surveys.  Yep, apparently there are several pharmaceutical companies that pay for feedback from CFers and their caregivers about their feelings and usage of certain CF medications.  One pharmaceutical company actually pays $50 per survey taken and $50 if for referrals.  It's taken a few surveys and few referrals but we finally earned enough money to purchase all the pictures!  Finally, it pays to have CF!)

We love Bennett's blue eyes in this picture!   It's funny to see how fat he looks!

Bennett's little gtube is poking out of his shirt.  It's funny to see such a big gtube on a little baby.  These days it's hard to tell through his shirt that he even has it.

Daddy kisses.  This is so like Bennett.  He is so passive, he just sits there and lets you kiss on him.

Kissable lips.

Momma delights in Bennett.

Big brother.

Daddy delights in Oliver.

Telling secrets and laughing. 

Playing games with Daddy.

Oliver smiles.

Long toes.

Momma's sweet boys.

A beautiful chaos.

19 October 2010

More Salmonella, but not from Bennett

We just got our family C.Diff. and Stool Specimen results back from the Pediatrician's office.  Looks like we are all clear on C.Diff.!  Hooray!

In fact, Bennett's results looked great.  It was Oliver who has Salmonella this time. 

Fortunately, the doctor explained that Salmonella is a common bacteria and does necessarily have to come from raw eggs and raw meat.  The bacteria can be anywhere at any time.  And Salmonella has many different strains.  In fact, it's very likely that Bennett gave it to Oliver through their play contact. 

Since Oliver isn't showing any symptoms, there is no treatment necessary. 

We have an appointment with the CF doctor, the pediatric surgeon and the GI doctor next week.   We expect good appointments since Bennett is doing so well these days. 

Every single smile on Bennett's face is truly a blessing to us as this boy has been feeling badly most of his life.  However, with C.Diff. taken care of once again, we are seeing smiles, laughter and overall happiness come from him once again.  It's truly delightful!!

17 October 2010

Bennett's First Haircut

A few days ago, we decided to get Bennett's hair cut. We had already tried to trim his "mullet" but the little curls by his ears were confusing strangers over whether or not he was a boy or a girl. So, we decided that by his first birthday, it was time to get a big boy hair cut.

Big Brother went first to show Bennett how it's done.  Oliver has thick wavy hair so he gets haircuts often.

He's become a pro at haircuts and was complimented today for being more still than most kids!

Little brother patiently waits for his turn.

Mumsy, Breck's mom, entertains him while he waits.

"This little piggy went to market...this little piggy stayed at home..."

Bennett loves his toes tickled.

Sweet times with Mumsy don't last long...

Soon, it's Bennett's time for a haircut.  We didn't even get a "before" picture because as soon as we put Bennett in the chair (actually a ride-able hotwheel car turned into a chair), he completely lost it.

 And we mean lost it!


Little mohawk.  (See Bennett's newborn mohawk taken exactly one year ago:

Bennett wouldn't sit down so he just stood there and hung on for dear life.

It's the ugly cry.

Trying to calm him down.

 Momma wonders if he'll handle it better in her arms.

Forget it.  He didn't like it any better. 

Mumsy tries to comfort Bennett.  Oliver finds the whole thing rather boring.

Finally, relief from the torture!!

All done!

Interested in the toy.

A little boy haircut.
 Before Bennett's first haircut. (9.30.10)

 After Bennett's first haircut. (10.16.10)

Happy again in Momma's Arms...and looking so grown up!