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Archive for November 2010

A Cure.

Tuesday, November 30, 2010

Tonight, Brian and I put the kids to bed right in time for me to snuggle on the couch in my pajamas with my laptop to attend a very important meeting (Brian had to study).  The Cystic Fibrosis Foundation was offering a webinar called, "Research and the Future of CF Care" at 8pm tonight.

Each year, all the CF experts in the US get together at an annual conference.  It's a conference I hope to attend one year myself.  But most of all, it's the conference I look forward to hearing about afterwards.  Many CF parents like myself wait anxiously to hear what the experts share at the conference.

We most long to hear the answer to one specific question:
When will there be a cure for CF?

Tonight, I looked forward to hearing from several experts on the Cystic Fibrosis Foundation's webinar (both who were at the annual CF conference) who would shared the answer to this question as well as others.

For the first thirty minutes, one expert discussed the current research and clinical trials being done to find a cure.  Much of it was science/biology talk.  Most I understood but some I did not.  The bottom line is there is alot of research being done to fix the cause of Cystic Fibrosis - which is very exciting

But eventually, the moderator asked the simple question we were all dying to hear:
When will there be a cure for CF?

This was the most poignant part of the webinar for me.  This is when I listened most closely and afterward began to tune out that which followed.

The expert basically said this (I can't quote him since I didn't write down what he said verbatim):
In the next decade, there will be greater treatments that will offer a better sense of life.   In the following decade, we will likely find finding simpler therapies that will provide that sense of life.  A cure for CF might not look like something that "just gets rid" of CF.  Instead, a cure for CF is going to be something that significantly helps make life better for those who have it.

Wow, I thought. That is the most honest and clear answer I have ever heard regarding a cure.  There will be no cure, per se, any time soon.  But there is a reason to hope.

My thoughts faded into a dialogue with myself over the idea of a cure.  I tried to tune back into the webinar several times.  But I was stuck on this new idea of what a "cure" means for CF.

When Bennett was born, I would often have people tell me that "a cure is just around the corner" or "we expect to see a cure in my lifetime."  The comments were always said with kindness.  But it always felt so empty.  There was little substance behind these comments because the hope of a cure seems like a pipe dream.  Much research is being done but no scientist yet claims to be near a cure.

And today, hearing this CF expert (a doctor from the University of Alabama) say this felt good.  It was disappointing to hear.  But it felt like something I could finally hang my hat on.

Cures rarely just "happen."  In fact, most diseases are not even cured - but eradicated (such as polio or cholera).  Cancer still exists but often can be treated.  HIV still exists but now offers an almost normal life to those who have it.

When will there be a cure for CF?  I don't know.  Maybe some day.  But the better thing for me to expect for Bennett in the way of the future is a that he will continue to gain ways to manage the disease so that he can live life more fully - and hopefully as long as he would otherwise.

I won't ever stop wanting a cure in every sense of the word.  But, after hearing this expert reply to the simple question, I realized I need to start preparing myself that CF is here to stay - even if only in the background.  Medications, therapies, treatments will help.  We will continue to use them and support research for them.  But will Bennett ever wake up one day without any CF symptoms as though CF never existed?  Sounds like probably not.

And that's ok.  Because life is a gift, for however long we are given it.  And we'll gladly take his life - cure or not. 

I think I can stop asking this question now.

Wow, it's almost December?!

Monday, November 29, 2010

You know you're a CF Mom when, while at the dinner table, you reach for the salt and pepper and, without thinking, you pick up your child's enzymes instead!  Awkward!


It's hard to believe we are days away from entering the last month of 2010.  December has arrived so quickly!  We are already planning out the month and reminding ourselves to do what we can to take it all in strides. 

December can often be overwhelming with the combination of parties, presents, friends, family and traveling.  Sickness can add to the chaos so we are doing everything we can to minimize our risk of stress this month - for any of us, but especially Bennett.

Bennett's health is doing really well these days, though.  It may be a combination of warm weather (it was in the 70's today) and half-hibernation (we've slowed down slightly our outings and interactions with other little kids out of caution - this seems to have worked so far as we've dodged the stomach bug and pneumonia). 

However, the cold temperatures are about to hit the Lone Star State and it's nearly inevitable that we will not be able to keep the colds and virus' back completely.  In fact, both Brian and I have had a cold in the past month.  Thankfully, Bennett-bear has yet to catch anything! 

We realize that we don't live in a bubble, so we are somewhat prepared to host whatever little bacteria/virus' want to enter themselves into our bodies this winter season.  But, we're working hard to limit our activities and stress so that we can sit back and enjoy the holidays, rather than receive whiplash while watching it pass by!

Turkey Dinner with our littlest Turkey

Saturday, November 27, 2010

We had a wonderful Thanksgiving with family and friends.  This Thanksgiving has truly been a peaceful time, for which we are thankful.

This week Brian was able to really rest from the stress of school.   Bennett's health, all things considered, is better than ever before.  Oliver is talking We had a wonderful Thanksgiving with family and friends. This Thanksgiving has truly been a peaceful time, for which we are thankful.

This week Brian was able to really rest from the stress of school.  Bennett's health, all things considered, is better than ever before. Oliver is talking more and sharing more with us about his perspective on the world, which we love. And I am feeling quite balanced, which is refreshing. 

Of course, we are also thankful for families who are incredibly supportive to us and friends who care about us deeply.  Our blessings overflow, which is quite humbling to us as we deserve none of it.

I have a funny story to share about our littlest turkey at the table this year...
Since there were too many of us around our table for Thanksgiving dinner, we chose to put Oliver at a table of his own (we brought in his child-size table from his room). It didn't take but a few minutes before Bennett was trying to climb up to sit in one of the little chairs.

I fixed Oliver's plate, a small version of my own, and handed it to him at the child's table.  Shortly after, Bennett cried out indicating he wanted a plate of food, too.  So, I made a smaller version of Oliver's plate for Bennett.

I caught on to Bennett's desire to imitate so I made sure to give him a spoon to use with his food, just so he could feel like a big boy too. 

But you can imagine my surprise when I turned around to find Bennett was happily eating his food, just like his big brother!


"I think I might like to try this!"

Green beans!

Bennett happily enjoys his meal while sitting across the table from Oliver.

So proud of himself!

Needless to say, one of our most thankful moments this Thanksgiving was over Bennett trying new foods on his own.  Even if he never gets rid of the G-button or never eats enough to sustain himself, we are thankful that he gets to experience the goodness of food - especially a Thanksgiving dinner!

We are cooking like the Thanksgiving Turkey!

Wednesday, November 24, 2010

Bennett peers over the side of his crib waiting for his morning to begin.
It's the day before Thanksgiving and it's 80 degrees in Texas.  We have enjoyed wearing shorts and flip flops today as we watered our flowers, cleaned our house and generally prepared for family to arrive for the weekend.

We are super excited that family decided to visit us this holiday so that the boys can stay in their same bed and routine.  However, we look forward to traveling to visit both sets of families for Christmas!

Holidays are really fun and we are glad they have arrived.  We'd just love for it to be cold enough to put away our sandals in time for Christmas!  Oh, the Texas life!

A Follow Up To "A New Set of Lungs" Post

Tuesday, November 23, 2010

This morning, we received a really nice comment from a man, who has CF and is living with a new set of lungs, on Bennett's blog regarding yesterday's post.  I have posted his original comment below in bold.

I found this man's story even more compelling when I read why his website is called "Climbing for Kari."  To find out yourself (it will give you chill bumps), go to http://climbingforkari.org and scroll down to the picture of the cute girl smiling. 

Bennett's Cystic Fibrosis has not only focused our attention on the importance of living in the present and appreciating the gift of good health...but it has also given us a greater appreciation for organ donation.

Brian and I hope to both be donors when we die.  And we hope that should Bennett, when he is older, need the chance for a new set of organs, someone will give that gift to him.

"Hi Breck!
Thank you for telling us about your friend and his new lungs -- I will keep him in my thoughts and prayers...

It is a truly amazing thing -- after living your whole life with crappy, cystic fibrosis lungs -- to be given the chance to breathe, "normally", freely and easily -- it's mind-blowing...

The first breath is not usually exhiliarating - the lungs we're given have undergone incredible trauma, and they're being put into a chest that has been opened and has gone under incredible trauma -- it can take months before we breathe deeply -- but for most of us, it is amazing from the very start... I remember when I regained consciousness and I was breathing without the vent -- I was on room air before the next day -- but breathing is often in short breaths, panting almost... But I remember looking up at my monitor, on room air, and seeing my O2 sat at 95 and I started to cry. I start to cry when I think about it now... That was 10 years ago for me.

I hope your friend's journey is like mine -- I hope his recovery and his life after transplant is as amazing as mine has been... He's in for an incredible ride... I learned about the beautiful girl who saved my life a few years after I received her lungs. After struggling almost 40 years with cystic fibrosis -- this breathin' stuff with "real" lungs blows my freaking mind. I think about it constantly - and I think about her throughout the day, every day. I can see her smile when I close my eyes... I have some of our story at www.ClimbingForKari.org.  I hope after struggling with his lungs for so long - that your friend's journey is like mine...

And I hope that your precious little one benefits from those of us who have gone before him... I've been hearing about a cure or treatment for CF being "just around the corner" for the better part of 40 years now... It won't serve any purpose for me now -- but I've never been more excited for people like Bennett than I am at this time... I hope we find something that will allow you to cuddle his grandchildren...

Love, Steve

Steve Ferkau
Chicago, IL" 

A New Set Of Lungs

Monday, November 22, 2010

The boy with CF that I used to babysit (and whom I briefly referred to here) is no longer a boy.  He's a young man in his early twenties.  I haven't mentioned his name or much about him on Bennett's blog on purpose.  I want to protect his privacy.  However, it is hard not to share our thoughts on something really really exciting that happened to him last night.

Last night, the young man, who has been on the lung transplant list for several weeks now, got the call that he had new lungs waiting for him.  And so, into surgery he went - within hours of the call.

He received a double lung transplant in a surgery that ended this morning.  According to his mother, he is still sedated so they have not been able to talk to him to find out how his new lungs feel.  But from other CFers who have experienced a lung transplant that I have spoken to and/or read about, that first real breath is absolutely exhilarating - because it's one of the first times they can actually breathe deeply!

We are extremely excited to hear about this young man's new opportunity to breathe.  But we are also paying close attention to the process as we know that without a cure, Bennett will likely live out the same journey at some point.  The more we know, the more strength we gain and the more ok we are with the process.

Please keep this young man in your prayers as he goes forward.  His main concerns will be rejection and infection to his lungs.  God has been faithful to this young man - and continues to be.  Just has he has been with Bennett.  Praise God from whom all blessings flow!!

Video: Bennett's Favorite Book

Friday, November 19, 2010

Recently, Bennett found a basket of books in his room.  One of the books (most likely the easiest for him to pull out, because it is softback) is a book called, "Too Loud Lilly."  Bennett loves this book and always wants us to "read" it.  We end up having to paraphrase the book because it's technically too long for which any 13 month old would want to pay attention.

Yesterday, while "reading" him the book, we began to see so much personality come out in him.  So, we grabbed the camera to document.  The video shows us "reading" (aka making it up) the book three times.  But each time he seems to get more excited.  We love how he decides to take off at the end.

Annual Pumpkin Picture

Thursday, November 18, 2010

Each year, I try to get a pumpkin picture with the boys. Here is Oliver's first Pumpkin Picture...


October 2007

Here's my effort to get Bennett's first pumpkin picture:



 







Finally - a great picture...I just forgot the pumpkin!  Ooops!

Results from our CF Yearly Appointment

Tuesday, November 16, 2010

We received the bloodwork and culture results from Bennett's CF Yearly Appointment.  This appointment is a sort of "baseline" appointment which allows the doctors to compare his disease year to year.

We are so excited that Bennett showed no concerns on his throat culture.  EVERY clean culture is a reason to celebrate as we know there will be one day when Bennett cultures a bacteria in his lungs and we begin a new regime of time-consuming medications.  My secret hope and prayer is that we will get to at least three years old without culturing a bacteria.  But, odds are he will likely culture something sooner.  We will thank God for every sign of health, though.


Bennett's bloodwork came back fairly positive.  The only major concern, which is easily fixable, is that Bennett is too low in Vitamin D.  So we've been instructed to supplement with Enfamil D-vi-sol drops, along with Bennett's AquaDEKS vitamin medication he gets every day.

Apparently vitamin deficiency is a big deal for CFers.  Bennett has been on a vitamin supplement since birth.  But I guess I didn't really understand why vitamins were all that important in the scheme of things.  (Oliver's pediatrican has mentioned vitamins at times but never with real concern that he wasn't getting enough.  And I could certainly eat better and take in more vitamins, but have never worried that vitamin deficiency in myself would be an issue.)  However, I have recently learned that CF severely blocks vitamins to the body so much so that not having them can be very serious.  So, we have added a new vitamin to his daily list of medications! 

Hooray for blessings from this appointment!  No serious issues and no need for antibiotics!

What's it like?

Monday, November 15, 2010

I often wondered, before Bennett was born, what it must feel like to be the mother of a child with cancer.  How difficult must it be to watch your child suffer?  Or, for some, to face the reality that your child would not make it. 

Over the years, I have followed many families experiencing situations, such as childhood cancer, that I would never want to ever experience.  And I have been fascinated by the strength and resolve of the parents during such pain.  Even now, I follow Cami's story.

Before Bennett, I wondered many times:
What is it like to be a mother of a child with a life-threatening disease?

Even as I faced my own son's diagnosis of a terminal illness a year ago, I couldn't help but wonder what it must be like for those CF moms ahead of me - those who have been living with CF children for many years.  I wondered:

What is it like to live your life knowing your child may not make it to 40?

So, I found it a bit ironic when this same question popped into my head during worship at church this Sunday.  We were singing the song, "Everything Glorious."

As soon as I muttered the chorus "You make everything glorious," thoughts of sadness flooded my mind.  Faces of many friends/people I know who are hurting rapidly flashed in my head.  I was singing "You make everything glorious" and yet I was thinking of everything that was not glorious.

My heart and mind conflicted each other.  My heart wanted to sing truth about God while my head wanted to remind me of lies.

How can God be glorious when there is so much pain and sadness around me?

Then, a recent memory of my own pain bubbled up.  Today I could sing the words "You are glorious" but only a year ago I struggled to speak them.

How could God be glorious when my baby sits in the NICU struggling to eat facing a lifetime of illness and an early death?

As my thoughts danced through my head like the music that played on the church stage in front of me, I heard another question flitter about - a question I had many times asked...just never to myself:

What is it like to be a mother of a child with a life-threatening disease?

And my heart replied, this time, from someone who knows:
It's feels no different than before.  I still laugh and cry and sing and mourn and pray and hope.  I am still the same...except now, when I sing those words, they are real to me - sharper, more focused, more poignant.

Now, I know more what I have meant all along when I sing "You make everything glorious."

This One's For The Therapists

Sunday, November 14, 2010

This post is especially for Bennett's therapists.  Despite our greatest hesitation, we finally gave in and let Bennett get completely messy...on purpose.  Bennett's therapists have encouraged us to allow Bennett to play in "squishy" foods such as whip cream, applesauce or pudding.  The hope was that Bennett would enjoy eating foods he typically doesn't like to touch: "gooey" foods.  (Obviously, he got over his issues tonight.)

Consider this therapy:





 





Of course, pudding time was promptly greeted by a bath afterwards.  You can guess what color the water turned.

Shoelaces

Friday, November 12, 2010

The funniest thing came in the mail today.  Oliver smiled when I opened it and said, "You got suprise!"  Yes, a suprise indeed.
Apparently I was one of the first 1,000 CF walkers to register a team for the Cystic Fibrosis Foundation's Great Strides 2011.  And what do the first 1,000 people receive?  Apparently, they receive pair of shiney new shoelaces!


I have no idea what I will do with such a jewel.  But I will find something to do with them, I suppose.  In the 80's, it was popular to wear them on ponytails.  I guess my Adias could use a new pair of strings.  Who knows... (if I had another pair, maybe this? http://www.youtube.com/watch?v=djAGEbD4Lwg)

But what I do know is we are all signed up for Great Strides Waco 2011!  Get ready, Bennett's Brigade! :)

By the way, Hanne Line and Margaux, you can find that adorable human body model apron from yesterday's post at Lakeshore Learning. :)

Cystic Fibrosis Wish List

Thursday, November 11, 2010

It's funny how having a family member with a lifelong disease can affect you over time.  I am not naturally fond of science (although Brian loves it).  But every time I see a book about, a poster about or a model of the human body, I now stop and study it carefully.  The body has become incredibly more interesting to me since I have witnessed what happens when body systems "go wrong."

I have debated on purchasing many of the books, posters and models I have come across.  I'm always evaluating whether or not the human body book, poster or model I've found might be helpful one day for explaining Cystic Fibrosis to the boys, their childhood friends or our adult friends...sometimes even to ourselves.

Because I've come across many great resources, I've decided to create myself a CF Wishlist.  Here's my first future purchase:

It's a Human Model cloth apron from Lakeshore Learning.  It's not only perfect for teaching preschoolers about the body, but it's perfect for teaching anybody about how CF affects the human organs.

I forsee using the apron for family discussions about why Bennett is sick and how the medications he is taking helps his organs stay strong.  We are always looking for easy teachable ways to teach ourselves and others about this disease.  This is just one of the things we think will help us do that more easily.  It's pretty cute, huh?

Aunt Brook and Uncle Barrett Visit

We were really lucky to have Aunt Brook-Lyn and Uncle Barrett (two of Breck's three younger siblings) come visit us this past weekend.


The boys are totally in love with them both.   
Come back soon, you two!  We love you!
(Next time we hope to have Uncle J.C. come too!)

His first step!

Tuesday, November 9, 2010

He did it! He walked for the first time today!

This morning, when Bennett's occupational therapist asked him (he was already standing) to walk towards the Kix cereal treat in her hand, Bennett took a step and surprised us all. He was pretty proud of himself.

Unfortunately, Daddy missed the moment as he had left for school only moments before.  So, we took video of Bennett walking later tonight, once Daddy came home to see:

Physical Therapy Update

Monday, November 8, 2010

We have been very happy with Bennett's intense therapy so far, especially his speech and occupational therapy.

However, we decided a week or so ago that we would slow down Bennett's physical therapy.  It was becoming too much to have so many therapy sessions and Bennett wasn't connecting well with his physical therapist (aka screaming when she came near and quite definitely working less for her than he does for us at home when she isn't around).

So, as of the beginning of November, Bennett's physical therapy was changed from twice-a-week therapy sessions to a once-a-month evaluation, especially since he is doing so well.  Bennett now spontaneously stands up on his own (for up to 30 seconds) and should take his firsts steps soon.

The physical therapist's recent evaluation showed that Bennett's motor skill development is normal for an 11-month old, just two months behind his age.  She feels confident that if we continue to work with him, he will catch up on his own.  We are also considering putting he and Oliver in some type of gymnastics class to continue developing his gross motor skills - and for pure fun! :)

Chirp, Chirp, Chirp...

Sunday, November 7, 2010

Cue the Jeopardy theme song.  Listen to those crickets chirping.  No blog posts since last Tuesday.  Where have we been?!

We have been playing outside, celebrating birthdays, visiting with family and generally living life.  Cystic Fibrosis has been in the back of our minds, no longer in the front of our minds.  Therefore, the blog has sat quietly, all alone.

Oliver's third birthday was Tuesday.  We had family come to town to celebrate and have been busy with his third birthday party.  Brian's birthday is Monday and have enjoyed celebrating his birthday this weekend as well.


Bennett has been doing fabulous!  He is continuing to surprise us daily by his interest in food.  Today, he cried until we gave him a part of a fruit gummy snack.  He loved it!  Foods he has recently enjoyed include hashbrowns, Reeses' cereal, mashed potatos and macaroni and cheese.  He doesn't eat but a few bites of food each time, but his willingness to do so is incredibly promising.  He loves to drink water from a sippy cup these days (which usually includes turning it upside down and pouring it on himself) and, tonight, let us brush his teeth.  These are all big milestones for our once-orally-defensive g-tube baby!


And while we have yet to see Bennett's first step, he loves to randomly stand up on his own and test his balancing ability.  He also wants to climb, climb, climb!  If we forget to strap him in his stroller, he finds a way to stand up in the stroller to see better.  Here's what happen today when we didn't strap him to his highchair:


(if you can't tell, he found a way to stand straight up!  thankfully, he held on before we could sit him down!)

The other day, I was strolling through the grocery aisle when a woman who passed me said, "do you know your baby is standing up in his stroller?"  I laughed and said, "yes, he won't sit down.  I'm being careful.  We are almost done."  However, when I looked down, my heart skipped a beat to find him sitting on the edge of the stroller as content as could be.  Obviously, I sat him down (he knows what "sit down" means) and strapped him in.  But the moment reminded me how quickly kids gain motor skill confidence - esp when they shouldn't!

Things are going wonderfully here and we hope it will stay that way.  Our greatest goals at this point are to continue his progress with his feeding issues and to keep Bennett from getting sick.  Sickness is swarming around and among our friends and family so our prayer is that Bennett's health will continue to stay strong, especially as we head for Winter!

A Moment of Cheeto-Face Goodness and Gifts of Bread

Wednesday, November 3, 2010

These pictures were taken during lunch a few days ago. Bennett had gotten dressed from the bottom down but still had his sweet little pajama top on (which is probably best since the top was an absolute mess when lunch was over). For whatever reason, Bennett was just grinning from ear to ear this day, laughing and making us smile, so Mama had to bring out the camera to catch it. We delight in his smiles and developing personality as it hasn't been that long ago when we didn't see either one.








"We have no right to ask when a sorrow comes, 'Why did this happen to me?' unless we ask the same question for every joy that comes our way." -Author Unknown

Every good and perfect gift is from above.   James 1:17

Brother Cows

Tuesday, November 2, 2010

Since the boys are almost 2 years apart exactly (23 months apart), it's alot of fun to compare their pictures in the same clothing, at the same time period.   We are very fortunate that we can reuse most of Oliver's things for Bennett.  This will be the case only until Bennett wises up that he'd like a few original things of his own. :)

Oliver, 12 months, 2007 (just learned how to walk)


Bennett, 13 months, 2010 (almost walking)

Halloween 2010

Monday, November 1, 2010

Bennett was a cow this year for Halloween.  He seemed to really enjoy Halloween.  He stayed in his costume the entire time and enjoyed waving to people as we passed them on our street and met our neighbors at their doors.

Our little cow on the Mooo-ve.  (We love the costumes little "hooves".)


Oliver was a chicken this year to go along with the farm animal theme.  Oliver was delighted to wear his chicken costume that we found at a consignment sale for $11.   He particularly loved the idea that his wearing it made people laugh.  We thought it was pretty funny when a little girl trick-or-treating passed by him and called him "Chicken Little."




Bennett just loved being outside.  Thankfully the 85 degree weather from 3pm today gave away to temperatures in the 60's by 6pm.


Bennett particularly loved his pumpkin pail. 


The boys always love to ride in their wagon.


We praticed a few times with Oliver in advance to Halloween.  By the time he had to do it for real, he was quite a pro!  He loved knocking on the door and saying "trick or treat."  The only thing we forgot to teach him was not to reach out for the candy but to hold out his pail instead.  This is on tap for learning for next year. 


We didn't have enough daylight to get a family picture so we choose to take Momma-Bennett and Oliver-Daddy pictures instead.  It was super fun to watch the boys enjoy the evening.  We look forward to Bennett being able to really get into it next year.  However, we certainly count our blessings that he was even with us this year.  It seems only yesterday that we were wishing our little peanut could have been with us during his first year of Halloween.  All good things come from above!  James 1:17