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Archive for February 2011

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!

Since when did Bennett become a little boy?!

Thursday, February 24, 2011

"Since when did Bennett become a little boy?!" was the question someone asked me this week.  I replied, "within the last month?" 

But, honestly, it's probably been the last week that I've noticed a totally new child.  Bennett has not had C.Diff symptoms for over a week, if not more.  That is huge!! As we've seen before, when Bennett is well, he thrives.  When he gets sick, he seems to stall.  So, no wonder that Bennett has begun to make big strides!

Just in the last two days, we have heard him giggling more than we ever have.  He often giggles and Oliver or makes himself giggle (yesterday, he found kicking his legs really fast was funny...today, it was swinging his arms back and forth)...but laughter is a sound we have rarely heard from Bennett. 

We began cutting back on Bennett's feeds this week.  And he has begun eating solids quite nicely.  He's still eating way way below what he needs to eat to make up for the calories he is missing but he's eating good for him!  Tonight, he ate a tablespoon for macaroni and cheese, a tablespoon of peas and an ounce of apple juice!  That's more solids than he's eaten over the course of several days, especially when he had C.Diff.!

Last night, I also turned to Bennett and said, "Bye Bye" as he walked off into the next room.  I was shocked when he turned to me and said, "bye bye" back.  Bennett said his first word months ago but has never spoken since.  He started really babbling about two weeks ago.  We knew his talking would follow shortly after.  But he looks like he's really progressing now.  I wouldn't be surprised if he starts  adding new words in the next few weeks.

Last night, we found Bennett on the second step of Oliver's bunkbed. In fact, when I allowed him, he climbed right to the top (although, he's not so good at coming down).  It was only last week that I noticed he could climb up on the bottom bed by himself and get off the couch by himself!  It's nuts that he's developing so quickly!

We are so incredibly thankful for good health!  We are watching our little baby morph into a little boy.  It's incredibly exciting.  We miss the little baby things about him.  But we love hearing the giggles, watching him eat and seeing him become a happy almost-healthy boy!

This is BIG.

Wednesday, February 23, 2011

I read it first thing this morning.  Like every morning, I rolled over in bed a grabbed my cell phone and clicked the "news" app on my smartphone. With one eye opened, I read today's news headlines.

I always get excited to see the words "Cystic Fibrosis" in the news. But I was particularly excited when I read a New York Times article announcing big news for those with CF.

My heart skipped a beat. I could feel excitement bubble up within me. I don't usually get excited about new CF medications.  I don't want to put my hope in a "cure".  But this article seemed to indicate this is something to get excited about.

About mid-morning, I received a mass email from Robert Beall, CEO and President of the Cystic Fibrosis Foundation. I've never received a mass email from Robert Beall...especially one using words like, "great news" and "exciting results."

And then, this afternoon, I received an email from a sweet lady from my local CFF who invited me to an exclusive phone call with CFF "key contributors and other Foundation leaders" regarding the Vertex trial (how the heck I got invited to such a call, I don't know...).

So, I gave myself permission to get excited.  VX-770, a medication that has been in trials for some time now has been shown to work!  This may be one of the first steps to a real significant medication to overcome the affects of Cystic Fibrosis in the body.

This medication won't help Bennett in its current form.  Even if it did, it would not cure him.  But for one of the first times, the success of this medication in clinical trials offers decent hope of effective medications to come within Bennett's lifetime.

Here are the basics of why this is exciting...

A twice-a-day medication, called VX-770, in trials showed that patients' lung function improved, they gained weight, experienced fewer respiratory symptoms and felt substantially better.1  It is now being sent for FDA approval. 


VX-770 affects the underlying cause of Cystic Fibrosis.  So, it's success gives us hope that it can be modified so that all gene mutations can benefit.  However, right now, the drug, in its current form, affects only 4% of those with CF.  This is because VX-770 corrects only one CF gene mutation (there are over 1000 gene mutations). 

VX-770 will not likely directly affect Bennett since he does not have the appropriate gene mutation.  (However, the same pharmaceutical company that makes VX-770, Vertex is working on a medication for the most common CF gene, which Bennett does have.  Again, it will not be a cure...but it may significantly counteract Bennett's progressive lung issues when and if its placed on the market.)

During my conference call, in which I merely listened in while Dr. Bob Beall (CEO/President of the CFF), Rich Mattingly (EVP Medical Affairs of the CFF) and Dr. Preston Campbell (EVP Medical Affairs of the CFF) reviewed the findings of the VX-770 trial, I learned several great pieces of information. 
Dr. Beall referred to today as being "highest up there" compared to the day in 1989 in which the CF gene mutation was discovered (a significant finding for the science community as well as the CF community).  The CF gene was apparently the first of the first three ever discovered.

The VX-770 trial lasted 48 weeks (nearly a year) and found that there was a 10% sustained lung function improvement.  They said it was by far more than what they have seen with any other drug on the market including Pulmozyme (6-8% improvement), TOBI (6-8% improvement) and Cayston (3% improvement).  Dr. Mattingly explained that this was like "turning back the clock" 5-10 years!  Imagine having progressive lung disease but being able to take a pill and go back to the way your lungs were working 10 years ago?!  That is what kind of improvement they see with this drug.

This drug also showed, on average, a 7 pound weight gain.  That's a pretty significant weight gain for a CFer in 48 weeks.  I can't imagine how wonderful that would be if Bennett could gain 7 lbs in a year!  Weight gain and lung function are correlated as is life expectancy. 

Dr. Beall said at 8:05am Eastern today these results were sent Bill Gates to be placed on his desk.  Apparently, Gates was one of the big-time investors of this drug.  Kinda cool to think Bill Gates cares about this news.  Apparently, so do many in the stock market.  Vertex Pharmaceutical company's stock went up significantly shortly after today's news.

In response to this, someone on the conference call asked if people would likely give less to the Cystic Fibrosis Foundation because now our need is less hopeless.  Dr. Beall said that likely the opposite is true.  He said that he believes investors will see what significant things the Cystic Fibrosis Foundation is doing with the money they are being given and people will actually choose to give more.

There was a question about why the G551D mutation was the one that researchers studied.  Dr. Beall explained that it was the easiest mutation to potentially fix.  He called it "the low lying fruit" for researchers in the way of fixing a Cystic Fibrosis gene mutation.  However, Dr. Mattingly reminded those on the call not to be discouraged.  He explained that today's news is significant for everyone with CF because now that we know VX-770 works, scientists can begin to modify the therapy to work with other gene mutations.

Dr. Beall kept calling today's results a "home run."  But he did say "it's like we're in the 7th game of the World Series.  We hit a home run.  But we still have alot left to play."   I thought this was a great analogy.  It is wonderful to gain a sense of perspective of how big today's news is in comparison to previous and future news.  It is a big deal.  But we are in a long long fight.

Nonetheless, the thing I heard most from the men on the conference call - men who are incredibly passionate about what they do and who are acutely aware of the consequences of their work - was their unabashed excitement and genuine thrill over today's findings.  It was obvious that while this news isn't going to cure anyone, it is something to be celebrated.

My favorite statement from the call came at the end when Dr. Mattingly ended our call with this sentence...
 "This is an amazingly good day for all of those with Cystic Fibrosis."

It's exciting to be a part of something big...especially a "big" that may eventually extend my son's life.
Awesome.



To read more about VX-770, click here.

New Little Backpack

Tuesday, February 22, 2011

Bennett often wears his backpack when playing.  He gets the most compliments on such a tiny backpack for a little boy.  But, their faces really light up when we explain the little backpack (which holds his feeding pump and feeding bag) is actually feeding him while he plays.


This little backpack is an absolute gift!  It gives Bennett the freedom to roam and play independently even during his 3 daily hour-long feeds.  We purchased this backpack from a great little website called Feeding EssentialsFeeding Essentials is a small company made up of several moms of children with feeding tubes (affectionately called "tubies").  This backpack is made incredibly well and is so comfortable.  Bennett would never wear his old backpack but never cries when we put this one on him.  In addition, it is as cute as can be. :)


Here's a shot of the backpack where you can see the tube coming out of the backpack.  It's attached to his g-tube under his shirt.  Most people don't even notice, which is fabulous!


I had the boys sit down and wear both backpacks.  Oliver was a great sport.  He wore the original backpack we purchased about a year ago.  This black backpack is the backpack that the feeding pump manufacture sells.  It's nice and has worked out fine but is much too big for an 18 month old.  In fact, it's a bit big for Oliver's little frame.  We are so thankful to find such a fabulous item such as Bennett's new backpack!  We are even more thankful for the mommas who made it!  Having this backpack has given Bennett one more opportunity to move through life more easily, despite his daily health challenges!


Organizing The Medicine Cabinet

Monday, February 21, 2011

Recently, I began trying to "rethink" Bennett's kitchen medicine shelf.  We started noticing how the shelf was becoming a bit of a "catch all" of a shelf and yet we need the items on the shelf on a daily basis.  So, things were beginning to get crowded.  In an effort to make things easier, I purchased several small containers.


The first thing we wanted to fix was our morning and night routines.  Each morning, Bennett gets several medications.  But in the evening, he gets the bulk of his medications.  Since we use many of the medications several times a day, we started to get confused (between the two of us - Brian and myself) about which ones we had given and not given..and when we had given them.  Since we don't always have a chance to communicate, we needed a system so that either of us could give a medication without having to wonder if it had already been given.


Our new system makes it much easier.  Now, we pull out a basket whenever we need to give Bennett his meds.  These are all of Bennett's morning medications.


Next to that, we have placed his evening medications in another basket.  These baskets sit on the shelf next to each other so we can grab them quickly. 




Each time we use a basket, we must refill the basket for the next time need to use it.  We also must move the medicines that are used both morning and night to the appropriate basket.   (I would love to eventually have enough small bottles of medicines so we don't have to play "hot potato" with the medications.  But this works for now.)


Bennett's night basket includes his vitamins, his salt, Prevacid and probiotic.


We include all the necessary materials in the basket so we don't have to go hunting for them.  The teaspsoon is used to measure out his salt (in the yellow bottle).


Each basket is labeled.

This is Bennett's morning basket.

It is labeled as well.


Another couple of new baskets that sit on the shelf are for the individually wrapped medications.  Typically, we have to get these medications from their container (a box or a medicine bottle), unwrap them and then put them in the medication (both are open and crushed/poured into Bennett's night feed).  To cut down on extra containers, we have these labeled plastic bins.  Therefore, once we receive the boxes of individually wrapped medications, we just open up the box and pour the meds in containers.  Since the items are still individually wrapped, it makes it super easy to grab them and throw them in their corresponding basket so it's ready for the day.


On the left of our Morning/Night baskets is another container that keeps our plastic supplies (such as our Mighty Fix-it and extra Mic-Key adapters).  Behind the Morning/Night baskets sick extra medicine supplies and bubbles (our motivator for Bennett taking his enzymes).  It's so nice to now open the cabinet and see order instead of chaos!!

Laughter in the face of "Limits"

Sunday, February 20, 2011

:::EDIT: Thanks to my friend Joy, here's a better youtube video of Vujicic: http://www.youtube.com/watch?v=Tl58qufXfYk:::

A year or two ago, a youtube video came across my email about an Australian guy with no arms or legs. I don't usually like forwards but, for some reason, this one compelled me to watch it. (You can see the video here: http://www.youtube.com/watch?v=Gc4HGQHgeFE&feature=related)

I vividly remember feeling quite inspired from this man's ability to overcome a devastating disability, no limbs.  I remember the video definitely made an impact on me, even after just a 4 minute video.



So, when I had a chance to read Nick Vujicic's book called, Life without Limits* through the Blogging for Books program I participate in, I was super excited.  I am quite hungry to learn ways to best raise Bennett into a confident young man who does not dwell on his challenges but faces them with strength and faith.

Vujicic, through his book, strives to inspire those who are feeling down or overwhelmed by way of any number of situations.  I appreciated Vujicic's efforts to encourage the reader but I was most interested in hearing how Vujicic succeeds in a world that does not seem able to accomodate him.

While reading the book, I found myself longing for answers to questions like, "what happened when this young man was a baby that he grew no arms and legs?" "how does he function? is he independent at all?"  "what did his parents feel and how did they deal with his challenges?"  "how does someone like this have such a great perspective in life when they are faced with so many difficulties time and time again?"

This book answered most of my questions. But my favorite parts of Vujicic's book were the ones that had me laughing...Vujicic's insights into how not seriously he takes his disability and, for that matter, life in general.

Here are some of my favorite quotes from the book: 

"Look at that kid in the wheelchair!  He's an alien," my cousins would scream across the shopping mall, pointing to me.  We all laughed hysterically at that reactions from strangers who had no idea that the kids picking on the disabled boy were really his strongest allies."

"I can't tell you how many times I've asked a rookie caregiver to give me a drink of water and he'll try to hand me a glass.  There is always this moment of pause with his hand extended, holding the glass in the air and waiting for me to take it.  Then there follows a sudden rush of blood from the face of the caregiver as he realizes, Oh my God! I just tried to hand a glass of water to a guy with no arms!  What was I thinking!"

During airplane pre-boarding, Vujicic asks his caregiver, "Vaughan, quick, before anyone else comes aboard - lift me up and see if I fit in the overhead baggage compartment!"  Having no trouble, Vaughan "hoisted me up and gently placed me on my side...tucked a pillow under my head and snapped the door shut, leaving me perched above the seats.  An older gentleman came down the aisle and reached up to put his bag in my compartment.  He opened the door - and nearly jumped through the roof of the airplane.  I popped my head out.  'Sir, I don't believe you even knocked!'  Luckily, he was a good-natured bloke, and we all had a nice belly laugh."

If I walked away with anything from my reading Vujicic's book, it is to not take Bennett's challenges too seriously.  Everything can be faced and eventually overcome.

A CFer that I admire is Ronnie Sharpe from http://runsickboyrun.blogspot.com.  Earlier this month, on his birthday, Ronnie wrote about his getting older and the issues he has with people's stress over life expectancy numbers of those affected by Cystic Fibrosis.  (Statistics show that the life expectancy for those with CF is currently 37 years.)

After reading his blog entry for the day titled "Only 6 Years Left?", I ran across his name on Facebook and remebered it was his 31st birthday.  As I wrote him a quick "Happy Birthday" message under his profile, I added, "Make those last 6 really count!"

I was reminded almost instantly that Ronnie also has this type of humor-in-the-face-of-adversity attitude I want Bennett to have when Ronnie messaged me back on Facebook, "I just have to tell you, I laughed out loud to your commont on my FB wall today.  That was awesome!!!"

Brian was, at first, mortified when he heard what I originally wrote to Ronnie.  But I reassured him that neither Ronnie nor I had taken the comment seriously.  CF is a serious disease with serious consequences.  But that doesn't mean that we have to take our battles with it seriously all the time.

I actually blogged about this topic a while back as I have another friend who has taught me to laugh in the midst of challenges (http://bennettgamel.blogspot.com/2010/06/breck-thoughts-humor-in-face-of.html) but it's a topic I like revisiting.

I need to continue to remember humor can be healing to the soul.  I am glad that the book Life Without Limits was able to teach me this again.

A joyful heart is good medicine, but a crushed spirit dries up the bones.  Proverbs 17:22
  


* Here's my review of the book Life Without Limits: I recommend this book. It is an inspiring book about Nick Vujicic's story. I appreciated Vujicic's stories, humor and uplifting comments. My only disappointment was that the book did not tell more of Vujicic's story but, instead, was watered down with merely encouraging thoughts. I think the book would have been better to have been an autobiography and allowed encouragement to the reader be implied. Nonetheless, it was a good book I would recommend, especially to those who face daily challenges. A complimentary copy of this book was given by Waterbrook Press for an honest review.

I don't want to serve.

Thursday, February 17, 2011

Sunday was my first time at church due to colds and our pure exhaustion after our late January ER visits and inpatient admission.

My favorite thing about church is our community.  And I greatly appreciated the sweet smiles and sincere "hello! how are you's" I received after being gone for a bit.

I even had a few friends give me a grunt or roll of the eyes as if to communicate, "oh my gosh, we heard how hard things have been for you guys the last few weeks..." which was usually followed up by a "are you guys doing ok?"

After a few of these very similar conversations, I began to really hear the words that fell off my tongue in reply.  Each time I was asked this question, I responded with a nod and a smile...and if the conversation lingered enough, I would expose my deeper feelings and admit, "I've been feeling a bit trapped..."

Trapped is a good word to describe how I have felt recently.  In dreary January.  During Cold season.  Stuck in a house with two active boys.  After a lonely hospitalization.  After seeing my son suffer.  Trying to catch back up to life.

Trapped is when one feels there is no place to go or no way out.  And, honestly, that's how I recently felt as a mother, even more so as a CF mother.

It's easy to feel embarrassed for feeling "trapped" when you're the one who chose to have two children and care for them full time.  It was a choice, wasn't it?

But my before-I-had-children fantasies of motherhood didn't necessarily include forcing my child to eat enzymes or frequent admissions to the hospital.

I have realized that, at times, CF hijacks my opportunity to be a mother...forcing me to be more of a caregiver instead.  So, this adds to the feeling of entrapment.

Whether the feeling of being trapped was due to the overcast January weather and many days indoors or to the overwhelming demands of caring for a sick child, the fact is I have felt trapped recently...and most notably began to reminisce of my pre-mother/pre-married days.  I began to appreciate my previous career as a journalist and as a teacher.  I began to wonder what it might be like to pick those loves back up again.

I began to dream about my own dreams - what do I want to do with my life...accomplish...experience?  And then, like a pop to my daydream bubble, the thought occurred to me that those things may never happen.

When I chose to be a mother, I chose to give up a part of myself.  Usually, this "giving up" lasts for about 20 years - until the child is raised - after which the mother and father's lives pick back up to  continue on with their own dreams and ambitions.

But special needs children are different.  They often need more care from their parents - physically, financially, emotionally - some of it, if not all.

And considering this, I began to remind myself that my life is not my own.  When I made a decision to have a child, I made the decision to give up my own desires/dreams/hopes in order to foster these  opportunities for my child.  Sure, I can still dream, hope and strive for things for myself...but when I chose to have a child, I decided that I was willing to put my desires secondarily behind my child's needs.

I did this when I got married as well.  No longer is my money, my living space and my time my own.  I now share it with my husband and often sacrifice what I want in order that we both get what we want together.

A decision was made when I married...and then again when I chose to have a child.  But that decision goes deeper. When I said my vows and when I welcomed my child into the world, I made a decision to care for my husband and my children through everything.  And I took a risk that "everything" might be "anything."

I will care for my husband - as the active capable loving man he is today.  I will care for my husband - should he get in an accident and become paralyzed.

I will care for my children - as the growing potential adults I hope they will become.  I will care for my children - should they be limited in life and need extra care.

I made a decision (conscious or not) to commit, even through the risk.

As I began to remind myself that I made a choice...and that it was a good choice then and it will be a good choice in the future (no matter the outcome), I began to feel less "trapped" as though Bennett's CF just happened to me.

The reality was, I chose to love this little baby, sick or not, and care for this little person no matter what gifts or challenges he would come with.  When I am caring for Bennett, I am not merely passively experiencing a part of motherhood, I am activity experience all of what motherhood means...

My friend and I were talking last night and in the midst of our conversation she mentioned that, as mothers, our "mission field" is family.  It is where God has called us, for a time, to care for others and demonstrate who He is.

I laughed and thought to myself, "But I sometimes, I just don't want to serve!"

It felt so right to say this because it has really been the deeper feeling behind the feeling of trapped.  "I don't want to serve"...that is what trapped as felt like to me.

I don't want to serve my children one.more.time.  I don't want to change one.more.diaper.  I don't want to refill one.more.sippy.cup.  I don't want to give my child his Vancomycin antibiotic or chest therapy one.more.time.

All of the sudden, as that thought rushed off my lips, I heard this whisper that simply reminded me that this is what it means to follow Christ...

It means to sacrifice...to love others...to put others first...

I can falsely believe that CF has made my life worse - that CF stole the freedoms that I am entitled to - that motherhood has me trapped and unable to accomplish my life wish list.  I can believe that I am merely living a groundhog day experience doing the same thing for my needy snotty children over and over and over.

Or, I can believe that I was given a great opportunity - to love on two little people who God has given me for a short time - to live a life of sacrifice whether that be my free time or my dreams or to care for a child who honestly might need me a greater portion of his life.

But when I realize that I am living in a place where God's gifts and my choices collide, I realize that I am not, in fact, trapped.  I am blessed.

G-Tube Surgery Team

Wednesday, February 16, 2011

After seeing how interested Bennett is in his G-tube and how important it is that Bennett learns about his own needs, we decided that he needed another member of the family who has CF.  So, recently, we assembled a team of top-rated doctors and decided to go forward with surgery.


The doctors all agreed that Bear needed his own G-tube to help him eat.  Dr. O began the procedure with a check of the patient.  He wanted to make sure Bear was strong enough for surgery.



Dr. O is known for paying close attention to his patients' need.



Dr. B also wanted to confirm the patient would do well throughout the surgery.



Medical supplies sit ready for the doctors to begin.



Dr. M (for Mommy) had the hardest part of the entire surgery procedure.  (She was also the only one qualified to handle the scissors.)  A small hole was cut in the patient's tummy and the g-tube was neatly placed inside.




Dr. O secured the g-tube in the patient by filling the g-tube balloon with water using a syringe.



 
This part of the procedure was repeated numerous times, not out of necessity but out of pure fun by Dr. O.  


Fortunately, the patient didn't seem to mind.  Dr. O has a very compassionate bedside manner with all his patients.



When the surgery was completed, Dr. B did confirm that the g-tube worked properly.  He was unable to be present during the entire procedure due to the many activities that keep him busy (activities such as chewing on his favorite spatula, having Daddy read him a book and playing with his favorite car).



Dr. O seemed to gain a great satisfaction with helping care for his patient.



It was really important for the team that they took Before and After pictures of the patient.  It is clear from these pictures that the surgery was successful.



Dr. O smiles during a picture taken at the request of the patient.  Bear seemed very happy with his new G-tube.  We wish him the best!

Fascinated by his G-tube

Tuesday, February 15, 2011

As we teach Bennett about his body parts (sticking out his tongue is his favorite), we have also taught him about his g-tube.  He knows it's there.  And he knows that Mommy, Daddy and Oliver don't have one.  But until recently, he hasn't really known/cared what it does.  


So, a few nights ago after Bennett (and Oliver) helped put medicine in his g-button, we offered Bennett a syringe to play with.  It was really funny to see him decide to try to put the syringe back in his g-tube.


In fact, he was so interested in doing it, he sat there for about 10 minutes doing nothing but putting the syringe in and out.




The nice thing about a g-tube is it doesn't hurt.  In fact, Bennett's doesn't even need to be cleaned other than just normally in the bathtub when we wash the rest of his body.


Although we wish that Bennett would eat more by mouth and be less dependent on a g-tube, we could not be more thankful for such a contraption.  Bennett has to take alot of yucky medicines, which would normally have to be taken by mouth.  We love that we do not have to force him to swallow these medications and can so easily slip the medication right into his belly.


Another benefit of putting medication right into his belly?  Tylenol works faster since it doesn't have to go by mouth and wait to go through his system!


It was funny to see that Bennett's g-tube was a great exercise in hand-eye coordination!  Bennett was very good at getting the syringe in correctly!


We hope that eventually Bennett will be able to put his own medication in - giving him a sense of ownership of his CF - and be able to connect/disconnect his own feeding tube.

A Dietician is coming by our house on Thursday to see if we can find a way to cut back on Bennett's feeds so that he might start to feel hunger again.  The issue with tube-fed children is they are often fed on a schedule.  Therefore, their bodies do not often feel hungry.  We want to help Bennett start to feel his body's own prompting to want to eat.


Bennett will likely keep his g-tube in for years - maybe forever.  The nice thing about it is that it's so small people usually don't notice it through his clothes.


We are given a replacement g-tube to keep with us at all times (in case the g-tube breaks).  However, we change the g-tube out every 6 months in order to keep a new clean g-tube at all times.


Thank God for beautiful medical supplies such as g-tubes.  They give us the freedom to live life without forcing Bennett to eat or keeping him in the hospital because he doesn't eat.  We feel very lucky to be able to have a g-tube.  While it makes living with CF even harder, it also makes living with CF even easier!