31 March 2010

Celebrating Six Months of Bennett

It's hard to believe that Bennett is already half of a year old!

Last night, we celebrated his big day!

Oliver really enjoyed all the fun...especially because he knew cake was involved.

We used a "6" candle on his cake to celebrate each month we have had Bennett in our lives.

Of course, since this was his Half Birthday, we celebrated with only half of the cake.

However, since Bennett doesn't have teeth yet, he didn't enjoy any cake. 

But we decided to light a candle on his very own serving of Apple Pears.

He seemed to be quite pleased with this arrangement.

Oliver helped his little brother blow out the candle.

And Daddy assisted his little boys.

Of course, no birthday party is complete without a gift.

Oliver loved opening Bennett's gift for him.

However, once opened, he did say, "Toy?  Where'd it go?"

Poor kid didn't realize that Bennett's present was a very appropriate gift for such an occasion as this...Bennett received his very own Half Dollar!  Lucky guy!

Bennett, you changed our family six months ago.  And we are so glad!  We love you, Sweet Boy!

30 March 2010

A Sneak Peek At The Guest List

Bennett's Half Birthday Party is planned to be a blast.  We are holding it this evening and will post pictures soon.  However, here is a sneak peek at tonight's guest list*:

*It turns out that Bennett chose to turn 6 months at the most inconvenient time for his PhD-going dad who is currently in the midst of some big semester long projects/papers.  So, in order to fully celebrate his half birthday party - all 15 minutes of it - we decided to invite just immediate family and close friends (seen here).  We hope no one's feelings were hurt in the making of this party.  There will certainly be more birthday celebrations to come!

Lordy, Lordy! Guess Who's...

...6 Months Old Today!?! 

29 March 2010

65 Red Roses

Young children with CF are often taught that their disease is called "65 Roses" since it is easier to say than "Cystic Fibrosis." 

That is the name of a new documentary about a young Canadian woman with CF named Eva Markvoort.  The documentary, called "65 Red Roses" actually follows Eva's efforts to get a new set of lungs (something many CFers choose to do when their lungs eventually begin failing them.)

We found out about the documentary a few months ago and are excited to eventually get to see it.  (You can watch the trailer here.)  We realize that there is a high likelihood that Bennett may be faced with this decision as a young adult.

Eva's story is a compelling one made even more real through a detailed and gut-wrenching blog she has kept about her battle with CF.  

However, this weekend, we learned through Eva's blog that despite efforts to maximize the medical technology available, her lungs failed her.  Eva passed away on Friday.  She was 25.

And a few weeks ago, she put out a "goodbye" video on Youtube where she struggled between breaths from an oxygen tank to say goodbye to the online community who had fallen in love with her.   She had known for weeks that she was dying.

Having an online community of other Cystic Fibrosis families is both a rewarding and devastating experience.  Across the internet are fingerprints of young CF fighters and bloggers who eventually succumbed to this horrible disease.  We receive updates of the latest CF news through "Google Alerts" and regularly read obituaries of young people who died of CF.

It makes us sad.  But it also helps us to better remember to live in the present.  We feel incredibly fortunate to be at the beginning of this journey.  We are better able to appreciate every day with our little man (and his big brother too).  No day is promised to us.  Each and every breath we take comes from God alone.  

28 March 2010

Bennett Enjoys Being Outside

On Friday, we enjoyed a beautiful day outside at the park!  Poor Bennett is so fair skinned and has such sensitive little blue eyes.  We were glad we dressed him in a hoodie!

Bennett loves being held and watching what happens around him.   He's incredibly easy-going.

25 March 2010

Oliver and Bennett Comparisons

At the request of Cynthia, we are posting some comparison pictures of Bennett and his big bro Oliver at similar ages.  We don't have very many of the two of them from similar angles.  So, we will have to work on get some more.  But until then, here's what we see so far:

Both Boys Have A Good Open Mouth Grin:

Oliver, 29 Weeks Old, May 2008

Bennett, 24 Weeks Old, March 2010

And They Both Have Similar Little Lips:
Oliver, 5 Months Old, April 2008

Bennett, 5 Months Old, March 2010

24 March 2010

Breck's Thoughts: Spring, Despair and Hope

Our Texas neighbors are starting to pour out of their houses like earthworms after a rainy day.  The bright sun has started thawing that which is around me.  And I'm once again reminded that song birds do exist.  It's obvious that Spring is here.

It's hard to believe that only a short time ago that we were preparing for winter.  Crisp air.  Falling leaves.  Long sleeves.

But these weren't the only changes happening six months ago.  The healthy baby I expected...turned out not to be so healthy.  Expectations of what it means to provide a lifetime of care for our new little one were forcefully being changed upon us.  And our dreams of having more biological children (my dreams of having a daughter) were being crushed.

Nearly a half year ago, as the long warm days were being eclipsed by cool dark nights, excitement was being thrusted out by disappointment.  So much so that we wondered if the season that we were experiencing was, in fact, not a season at all - but a completely new climate we would have to endure from here on out. 

Yet, here we are months later...beginning to feel changes happening again.  But these are good changes as hope is beginning to bloom once more.  Reminders of God's goodness are becoming more and more abundant.  Finally, joy is overshadowing despair.

No longer a newborn, Bennett is blossoming into a sweet baby who enjoys his new found trick of blowing raspberries.  With the cold/flu season over, we are feeling more free from the terrible anxiety that any sniffle or cough will send us to the hospital.  Bennett, each day becoming more round and pudgy, is no longer satisfied to simply lie on the floor - he wants to sit up, move and explore his world, which we love! 

We are beginning to discover parts of our "old" life again - while, at the same time, getting used to the new one.  But we have not emerged the same.  Our appreciation for our extended community has burgeoned.  Our dependence on God has become more desperate but our trust in him more firm.  Our awareness of the fragility of life is more keen.

Dare I say I'm thankful for a season such as the one from which we emerge?  I definitely do not long to go back for a visit!

Yet, I realize that cannot appreciate the songbird unless I hear it no longer...I cannot appreciate the sun's warmth unless I experience its absence. How much more valuable do I see a child than when I didn't expect him to survive?  Or how much more grateful am I for breath than when I know child may eventually struggle for something so simple?

In light of Easter, I much more do I appreciate Easter Sunday than when it is preceded by Good Friday?

Right after Bennett's diagnosis, many people, in an effort to be comforting, made statements such as "doctors are so close to a cure", "many with CF live a long life" and "we don't know what the future holds."  These statements were always made in love and for that I am thankful.

But sometimes, I would just cringe to hear these things.  At the time, I didn't know why they weren't comforting.

Yes, doctors are close to a cure.  But there is no cure now. 
Yes, many with CF live a long life.  But some do not.
Yes, we don't know what the future holds.  But we do know what is happening now in the present.

I see now that the reason they weren't comforting at the time was because these statements did not acknowledge the pain.  While they were said in love, they were an effort to celebrate hope in the absence of despair.
 But I believe that...
it is only through Winter that I can fully appreciate Spring.
It is only through the cross that I can understand Easter.
It is only through loss that I can appreciate hope.

So, do I want to return to the pain and anxiety we felt only a few months ago - of nearly losing our son, multiple surgeries and finding out he has a life-shortening condition?  No.  But could I consider it a gift?

Yes.  Because it is only through what we have experienced during the last few months that I can appreciate where we are today.

I am so happy Spring is here!

23 March 2010

Video: Bennett, 5 Months

22 March 2010

Enzyme Dilemma - Resolved?

We are meeting with Bennett's Speech Therapist today but we are already feeling alot of resolve with Bennett's enzyme issues.  Part of our success has come from an "ah-ha" moment of Breck's and part from a recent meeting with Bennett's Occupational Therapist.

Recently, Breck was reading a list of 4 month milestones and realized Bennett is meeting all of them...just about a month late.  That lead her to consider how much of Bennett's problem may be his inability to organize his tongue muscle.  Possibly he has not yet learned how to effectively push the food to the back of his mouth with his tongue.  Considering this, we have been able to be more patient with this issue believing some of it may resolve itself.

Then, a recent visit from Bennett's Occupation Therapist also helped us see that part of Bennett's eating issue does stem from what she calls an "oral defensiveness."  Bennett doesn't like things in his mouth and we need to be aggressive in changing that.

So, the therapist recommended that we take a "get permission approach."  We offer the food at the tip of his tongue and give him time to decide if he'd like more.  His giving us permission takes away any control issues that might arise from feeding between parent and child.  If Bennett doesn't want more food, we give him his pacifer (which makes him very happy).  After a few seconds, we pull the pacifer out and try presenting the food again.  Eventually, we offer the pacifer less and he shows interest in the food more.

At the recommendation of Bennett's therapist, we are also offering Bennett use of a Nuk Brush Massager several times a day in order to encourage his interest in putting things in his mouth.  We brush it against his cheek and again allow him to give us permission to put it near his mouth.  Since we have started this, he has already begun putting more things in his mouth.

So, while we are fully aware Bennett could again resist the enzymes at some point, we have noticed that the changes we have made are effective.  Bennett has started to enjoy his food to the point that we are going to ask his Pulmonologist next week for permission to begin feeding him solids.  We believe she will say yes since he will be 6 months old and most Pediatricians recommend to start feeding between 4-6 months.  We are happy to see that, most likely, at 6 months, Bennett should be ready to eat - enzymes or not!

21 March 2010

24 Weeks Old (Almost 6 Months Old)

It's hard to believe our nearly 6 month old resembles a little boy at times!  Here he is sitting up all by himself!

He did end up falling over head first into Momma's lap but stayed there for quite some time which was impressive for a baby who is lagging behind in some of his skills.  We think we're starting to see Bennett begin to catch up in some ways.

He started laughing about a week ago.  It is alot of fun to watch.

Bennett may be teething (as you can tell).  We haven't seen any teeth yet but there are signs they are on their way!

Bennett loves to look at you while he's on his tummy.  He hasn't rolled over yet but is gaining great muscle control on his belly.

Bennett loves to hear his name (particularly when it's spoken in a ridiculously high pitch).  He'll smile like you just made him blush!

Bennett is still a bit picky about putting toys in his mouth.  But chubby fingers are no problem!

Face plant: That darn head is a bit heavy at times to hold up for too long!

Our lean little boy is starting to look pudgy.  We love seeing his fat cheeks and every growing rolls of baby fat.

It's hard to believe how much babies change in such a short amount of time!  Bennett is certainly becoming his own little person these days!

17 March 2010

Bennett's Great Strides 2010 CF Walk Tshirts

::::Edit:  Heather, check out the link on the right side of this page that says, "CF Great Strides Walk 2010" for the link you requested.  Just click the "Great Strides" image on the page.  Thank you!:::

Well, it's been decided!  With 53% of the vote, this year's Bennett's Brigade Tshirt design will be in chocolate brown on Iris (baby blue) tshirts.

We plan to wear them in support of Bennett at the Waco Great Strides Walk on April 17.

Some family members and friends have shown interest in ordering a shirt so we are passing on this information for them:

If you want to order a tshirt, let us know via email ( or in person by March 31.  The shirts are $12 with the entire amount going straight to the cost of printing the shirt. If you can't be at the walk but still want a tshirt, we'd love to have you wear your shirt on April 17 and take a picture of where you are in the country on that day so we can put in Bennett's scrapbook to remember how you were thinking about him on this day.  (If you don't want or can't afford a tshirt but still want to be in the scrapbook, click the tshirt design, print it off and take a picture of yourself whereever you may be that day and we'll include you!)

16 March 2010

A New Favorite Spot

Here is one of Bennett's new favorite places.

He loves just "hanging out" with the family.

We love that he's learning how to put weight on his legs.

He enjoys playing with his toys.

And making himself move.

Sweet smiles.

Update - Life with Bennett

Almost right after returning from Missouri, we noticed some big changes in Bennett.  It's amazing with little babies how much they progress in such a small amount of time.  It seems like once we landed back in Texas, he decided to do all kinds of new things.

Here are some of the things we are really enjoying about our boy:
* Bennett is becoming more and more engaging.  He easily smiles when he feels good and loves to be held. He is also very ticklish.
* Bennett is putting more weight on his legs and starting to learn how to bounce and jump in his Jumperoo.
* Bennett enjoys listening to his voice and makes bubbles with his lips.  It is rewarding to see Bennett so happy.
* Bennett is starting to finally settle into a nap schedule.  This has been a relief for us since his needs can be quite demanding.  Now that we know when he will be awake and asleep, we can be more concious of his need.
* The nice Texas Spring-like weather helps us all to enjoy each other.  Bennett is very content to be outside playing in his bouncer or in his jumperoo.  He really enjoys watching big brother Oliver play and laugh in the yard.
* While Bennett continues to be about 1 month behind on his development, he does seem to be developing on that timeline exactly.  So, this gives us the reassurance that he will eventually catch up.

Here are a few things still concerned about but feel hopeful towards:
* Our biggest concern continues to be keeping him well.  If he gets too sick (esp. with a hospital stay), this will delay his development more. We are happy the typical cold/flu season is over.
* We are hoping Bennett's eating issues improve.  Unfortunately, if our experience so far as told us anything, it's that Bennett may struggle with eating for some time.
* Bennett's bowels have become more regular with Miralax, which is wonderful.  We have actually  noticed that he has had many fewer cramps since we have given him this gentle laxative.  While Bennett is not permanently on Mirlax, many CF children have to take it daily.  We will continue to keep our eye on any GI problems as those who have had Meconium Ileus in the past are more likely to have GI problems in the future.

15 March 2010

New CF Video

Bennett was recently featured in a CF video made by our friends in Temple.  The video can be found here:

Our friend, Julie (who has a daughter named Macy with CF) made the video to raise money for the Cystic Fibrosis Great Strides walk in their area.  She asked if she could include a picture of Bennett as she wanted to show pictures of kids in our area with CF.  We were honored and found the final product to be very moving.  It is a reminder to us how many children just here in Central Texas who are suffering with Cystic Fibrosis.

(By the way, Julie came and met Breck at the hospital when Bennett was in the NICU.  It was very sweet of Julie and we appreciate all of her support and encouragement.  We look forward to seeing Julie and Macy at Bennett's walk - as they are graciously going to join us.  We plan to be at Macy's walk as well!)

What will the Waco Cystic Fibrosis Great Strides 5K be like?

Several friends have asked us what to expect at the Great Strides walk this year. Honestly, we have no idea. We have never been...nor had we even heard about it until we heard about our son's diagnosis.

However, as we continue to have conversations with other CF families, we learn more and more what it might be like. We felt like the best way to share it with you is through pictures.

So, here are some pictures and links we found on the internet that might demonstrate what the CF Great Strides Walk will be like.  We did not take these pictures and these pictures are from a variety of Great Strides Walks throughout the United States. Click the picture to find their original source. 


13 March 2010

Enzyme Dilemma

Bennett started taking enzymes almost as soon as he started taking milk.  Even though he wasn't a ferocious eater (and, in general, has never been one), he was a champ at eating appleasauce and enzymes even at 1 month old.

All of this seemed to change around 4 months.  Slowly we began to see his resistence to his enzymes.  He now gags and cries when we put it towards his mouth.

Bennett uses his tongue to push the enzymes and applesauce back out of his mouth.  Clearly, he doesn't like it. 

Concerned that pushing him too hard might give him an oral aversion, we began trying something new - putting the enzymes through his g-button...

...until they got stuck (click picture for a larger image if you can't see them).  We ended up having to take Bennett's g-button out in order to unclog it.  

Here's another picture that might be more clear.  We couldn't believe that after only a few times of feeding him enzymes through the g-button, nothing would go through.  We were shocked to see it was *this* clogged. When even followed the manufacturer's instructions.

This is what the g-button looks like when it is not inflated.

In order to inflate, we have to put about 5 mililiters of water in it with a syringe.  To put the g-button in, we put it in Bennett's tummy deflated.  Then, we hook the syringe up to it, push in the water and inflate.

The formula is passed from the top of the g-button (see the flap on top?  that's what we use) through the skinny tube into his tummy while the water balloon stays inflated.  (See the tiny enzymes stuck in there??)

We cannot keep pulling the g-button in and out to clean it out regularly.  So, clearly, using the g-button for enzymes isn't working. 

Bennett is physically repulsed by taking the enzymes by mouth.   He even threw them up on us the other day.  (We decided to spare the details of that picture!)

So, we have contacted a speech therapist and our CF Clinic to see where to go from here.  We are a bit concerned because he still isn't putting toys in his mouth and isn't taking much milk by mouth.  Possibly there is some other issue going on?

We are also going to meet with Bennett's Gastroenterologist in the next few weeks as well.  Hopefully we can sort this out since not taking enzymes is not an option.  Oy, Cystic Fibrosis!