31 May 2010

Pictures: Memorial Day Weekend

This Memorial Weekend, Aunt Brook and Uncle Joseph (Breck's sister and brother-in-law) invited us to their lakehouse.

Bennett watches Daddy take Oliver out on the jetski.

They look like they were going fast but they were going only a few miles per hour.  Even then, Oliver wanted off pretty quickly.

Bennett practices his walking skills.

After time on the water, the boys played through the lakehouse glass doors.  (Aunt Brook and Mom are holding Bennett up).

They both just cackled at each other through the glass.

Later, the both took a rest.  Bennett hung out in the lounge chair.  Oliver (in the background) quietly stuck pine needles through the deck.

Oliver was fascinated with putting the "sticks" through the "holes."

Our newly turned 8 month old shows how big he is in the big seat!

Bennett sat up by himself for a good while.  However, he's not fully able to sit by himself yet.

Looking like a little man.  

We had a great time at the lake house!  Thank you Aunt Brook and Uncle Jos! 
Happy Memorial Day!

27 May 2010

Pictures: A Day In The Life

Our sweet angel is enjoying his tummy time more and more these days.  This means big brother Oliver is enjoying more floor time play as well.

 Why wait for little brother to crawl? 

It's much more fun to crawl over him anyway!

However, as a little brother, you learn to watch your back... never know who might be running behind you.

But that's what's so wonderful about big brothers.  They are always there to play.

And to be blamed for making all the mess!

26 May 2010

Continued Bolus Feedings

Bennett is primarily fed through his g-tube these days.  G-tube feedings are called "bolus feedings."  We finally gave up trying to give him a bottle about 2 months ago.  Now, we're pretty much bolus feeding him every day.  This consists of hooking a tube to his g-button, placing the milk in a syringe and allowing gravity to empty the formula in his tummy.

Bennett eats about 5 ounces of formula every 3 hours.  We are anxious to get to the point where his feedings won't be so close together.  But feeding him through the g-tube is fast so it's not necessarily all that bad.

Bennett is starting to roll over more (he actually sleeps on his stomach alot of the night).  So, we're having to coax him to stay on his back while we bolus feed him through the g-tube.  It's working right now but this little guy is going to be a mess to deal with when he starts crawling!  We're trying to figure out what we're going to do before we get there.

Breck has inquired with his CF doctor several times about his disinterest in the bottle.  She has continued to reassure us that not taking the bottle is not a big deal - he's only months away from being moved from bottle to sippy cup anyway.  We are just hoping he will take to the sippy cup!

Bennett is eating his solid food fantastically!  We have had problems in the past but as long as we keep him eating anything sweet (he loves apple baby food, sqquash, pears, berries, etc), he does just fine.  Peas are NOT his favorite.  We are also looking forward to his transitioning to solid foods in the next few months.

One funny story we can share that relates to the strangeness of feeding one's baby by a tube is a story Breck recently told of being on the playground with friends a few months ago.  A friend of a friend had joined a group of mommas whose kids regularly play on the playground together.  The friend of a friend, not knowing our story or Bennett's issues, curiously watched while Breck sat on a bench nearby and fed Bennett through his g-tube.

Later, this friend of a friend (a very kind mother who Breck has enjoyed getting to know) came up to Breck and asked about Bennett's needs.  (Breck appreciates when people ask - it offers an opportunity for us to share our lives with others and puts to rest any misconceptions that might exist.)  This friend of a friend certainly understood when Breck explained why Bennett is tube-fed and how it works.  But the friend shared, "oh, I thought that you were using using a lactation aid and were breastfeeding but through a tube.  You know how some babies struggle to take to the breast?  I thought you were just pumping milk to your baby that way."

Breck and this friend laughed.  Thankfully, this is not what Breck was having to do at the park.  However, either way, feeding a baby through a tube is always awkward. :)

24 May 2010

Pictures: Happy Baby

These pictures are from a few weeks ago, taken by our friend Matt.  We love these pictures because it shows how happy and engaging Bennett is these days. 

Bennett has really come to life in the last month.  He is very playful and very interested in the world around him, grabbing whatever he can get his hands on.  He smiles easily and loves to laugh at peek-a-boo.

Such a serious face.  In Momma's arms.

21 May 2010

Babies In A Sailor Suit

Both of us (Brian and Breck) were born with light hair.  As matter of fact, Breck's parents tease that she was practically bald as a newborn.  So, it wasn't Bennett blonde hair that surprised us but how dark Oliver's hair was when he was born.

When recently visiting Breck's parents, we came across this old picture of Breck as a 3 month old. Although, not the same picture, it is reminiscent of a recent picture taken of Bennett as a 4 month old in a similar outfit.

Breck, 3 months old (1980)

Bennett, 4 months old (2010)

20 May 2010

No More Pancrecarb...

Each day, we receive a Google Alert giving us updates on the search words "Cystic Fibrosis."  (Google Alert is where Google's "spiders" crawl through the web looking for any new internet and blog postings that use the words you've designated on which you've requested it to alert you.  In this case, it uses the words "Cystic Fibrosis").  

At first, it was devastating to receive these Google Alert emails.  So many of the alerts are from newspapers around the US listing new obituaries of those who have recently died from the disease.

However, over time, we've simply stop reading those and focused on more important information that is being placed on the internet, particularly information about research for a cure or other vital news alerts.  

One particular news alert we came across two weeks ago was a very important one.  It turns out, the medication that Bennett takes with every has been discontinued as decided on by the FDA.  And it's discontinuation was effective April 28!

This medication that Bennett never skips...we never leave our home without...and Bennett will die if he does not continue to receive.  We panicked and called our CF Clinic, who had not informed us of such important information.

Fortunately, they worked with us to quickly come up with a solution - we would rather seamlessly change brands and use Creon instead.  Creon, a similar pancreatic enzyme, doesn't work the exact same but works similarly enough if Bennett continues to take his Prevacid.  Creon is currently approved by the FDA.

We were glad to know that this change would be relatively easy.  However, there is always the potential that Bennett's digestive system doesn't handle the switchover as well.  We have to keep a "watch out" on his poops and his weight to make sure he is digesting his food as well as he was before.  

In a person affected by CF, mucus blocks the body's natural enzymes.  This is why Pancreatic Enzyme Therapy (taking enzymes before every meal) helps those with CF.  Without enzymes, Bennett's body would never get the necessary nutrition he needs from eating...even if he ate all day long.

When placed together, the Creon (on the left) are smaller pills than the Pancrecarb (on the right).  This is good news since one day, Bennett will need to swallow up to five of these at one time.

However, right now, we open each pill and pour it on his baby food before each bottle.  Right now, Bennett takes two pills per meal.  

When we compared the two pills, we found Pancrecarb is a bigger pill but has smaller beads (much better for putting through the g-tube - if that would have ever worked).  Creon is a smaller pill but has larger beads.

It turns out that despite that Pancrecarb has submitted its paperwork for approval by the FDA, it has yet to receive the green light...which we hope it does.  After using this medication day after day, we've become fond of it and look forward to possibly using it again.

Note to self: Isn't it so weird that when you become a parent of a child who needs lots of medical care, you can actually have a bond with a specific medication or piece of medical equipment?  Oh, the neuroses we have!  

19 May 2010

Enjoying Bennett

Our Family Enjoying Bennett Outside after Dinner

18 May 2010

Update - May 18, 2010

Things continue to improve around here.  Brian is finally done with his first year of his PhD program.  He made all A's which is excellent considering less than 8 months ago, he was contemplating taking a semester off to care for his wife who had just given birth and his newborn son who, at one point, doctors thought wasn't going to make it.  We are pretty proud of Papa Bear.  He's done good. :)  One year down and 3-5 more to go!

Oliver continues to love his role as a big brother.  He loves to get on the floor and play with Bennett, particularly if he can make Bennett laugh.  Today, after playing the "Where'd Oliver Go" game with Breck (this involves placing a basket on his head and calling Momma's name until she replies in a very convincing voice, "Where'd Oliver Go?"), Oliver placed the basket on Bennett's head and begin to ask, "Where'd Bennett Go?"  Sometimes we become anxious that Oliver will hurt Bennett in the process of his playing.  But each time, we hold ourselves back and wait for the boys to communicate their needs to each other.  Bennett rarely cries and is very laid back.  So, it was no surprise when Bennett didn't say a word despite being pinned down by his 2.5 year old brother's placement of a basket over his head.  The basket came off with Mother's quick reply, "Where'd Bennett go?" and Bennett just smiled.  There is a deep love there that grows daily.

Bennett is doing wonderful!  He is on the cusp of being too big for 6 month clothing.  He weighs about 17 pounds now and even seems a bit long for his baby carrier.  We are beginning to look at moving to a bigger and more permanent carseat.  He will continue to stay riding backwards until he is 1 year old but that will be here before we now it!  Bennett has begun rolling himself around the floor and enjoys playing on his tummy more and more.  He hasn't sat up or begun to try to crawl but we are no longer worried.  He seems to be hitting his milestones in his own time.

Breck is also doing well!  Despite her resolve to never travel again until our boys are 18, she is preparing for us another family trip to Missouri in a few weeks for a close friends' wedding and to see Brian's parents, Nana and Papa.  She continues to take the boys to doctors appointments and handle alot of the paperwork that goes into dealing with Bennett's care.  But the hospital bills have slowed, the doctors appointments are few and mundane aspects of life are beginning to once again be her chief concerns.

We are thankful for summer and all that it brings.  We know, like all things, it will not last long.  But we are determined to enjoy every bit of it!

17 May 2010

Another Bennett Beats The Odds

There is a great story about another Bennett (about the same age as our Bennett) who was diagnosed with a devastating disorder but has come out triumphant.  Thanks to our sweet friend Laura who sent us this message and link:

"Thought you might like to watch this story about another little Baby Bennett who's a fighter =)"

ABC News (who first carried this story) mentions that the mother has created a massive a list of resources for families of children with special needs.  Because it took forever for us to find them on the ABC website, we have posted them here:  We look forward to printing them out and looking through them ourselves.

16 May 2010

Visiting Another Great Strides Walk

Yesterday, we drove about an hour away to attend the Cystic Fibrosis Great Strides walk in Killeen, Texas.  Great Strides is a national fundraising event with similar walks in cities across the country.  (Notice the Hawaiian lei on Bennett?  Each child with CF was given one to wear at the walk.  The Lei both designated the child has special and helped parents know which children to be cautious of getting too close to due to the potential of spreading of infections among other Cystic Fibrosis patients.)

We decided to attend this walk because we know several CF families in the Killeen area.  We were especially excited to atten since we were unable to experience our own Waco Great Strides event due to rain.  This picture doesn't do it justice but it was tons of fun!  We were too busy chatting to get good pictures but there was a band, free food, a playground, a blowup jumpy thing for the kids and lots of different volunteers who made the event really enjoyable.

There was one family, in particular, we came to meet.  Julie, who has a kindergarten daughter with CF, came to visit Breck at the hospital in Temple while Bennett was still in the NICU shortly after we learned of Bennett's diagnosis.  Julie has become a great resource for families new to the disease.

Here is Julie (fourth from the left), Macy (with the lei) and their family taking their picture at the Great Strides sign (something most families enjoy doing each year to document the event).

Another family we had the priviledge of meeting was the Green Family.  Mitch and Season have two children, Zoe (in 2nd grade) and Jaxon (6 months old).  They found us at the walk (since we were wearing Bennett's tshirts) and knew about us from our blog.  We are so glad they found us!

Their little Jaxon (about a month younger than Bennett) has had a similar journey as Bennett.  He was born with meconium ileus, was in the NICU for a long time after he was born and was hospitalized for "failure to thrive."  Jaxon is even on the same high calorie formula as Bennett, although Jaxon does not have a g-button.  Thankfully, Jaxon is doing much better now.  While their doctors are different, Jaxon and Bennett go to the same CF Clinic at Cook Hospital in Fort Worth.  We look forward to keeping in touch with the Green family as we watch our boys get older.

We had a great time at the walk and visiting with other families!  Yesterday's walk raised over $60,000 to keep our children alive!   Here's an article detailing more about the Killeen Great Strides Walk:

13 May 2010

We're finally starting to see Bennett...

A few days ago, Breck's childhood friend Scarlett posted an article on the blog that she said made her think of us when she read it.

The article is written by a father whose newborn son was unexpectedly diagnosed with Down Syndrome.  At one point he wrote, "Parents in such situations often engage in a period of mourning. Before you can bond with the child you do have, you must mourn the loss of the child you don’t."

This is so true for us.  We have had to take a few months of mourning.  Even now, though the grief is more subtle, it still will rear its head in the strangest of places.

But everyday that passes where Bennett has a good day - a day with no pain, no throwing up, no spitting out enzymes, no struggling to breathe, no medical appointments, no constipation, no phone calls about blood test results - is a chance for Cystic Fibrosis to fade to the background.

Sometimes there are moments when we forget about Cystic Fibrosis completely!...only to be reminded when a new friend notices the feeding pump in his nursery or a stranger at a restaurant wonders why we're feeding our baby through a syringe and tube right into his tummy (always a strange sight). 

But we have finally stopped trying to digest as much information about Cystic Fibrosis as we can get our hands on.  Now, feeling a sense of fullness in our tummies, we are happy to more about the disease as we need.  But, for now, we know everything we want to know.

The visits to the doctor, while still frequent, are becoming filled less with anxiety and more with the feeling of visiting family.  Ever so slowly, we are becoming less concerned by what he can't do (such as meeting his milestones), and now are pleasantly surprised at what we can do! 

We now see a thriving chubby blonde-haired baby who *loves* to be cuddled, loves to be tickled and loves to sleep...yet, before, we saw a sick fragile baby surrounded by tubes and intense needs always on the verge of not making it.  

Like our very favorite line of newspaper article says, "A few weeks after Sam’s birth, Mary, speaking for both of us, said, “I’m finally starting to see Sam, and not his diagnosis,” we are starting to see less of Cystic Fibrosis and more of Bennett.

Each day we fall in love with him more.  Our hearts will never be the same.

12 May 2010

Pictures: 7 Months Old

Bennett is getting bigger and stronger by the day!  On April 30, he turned 7 months old!

He weighs almost 17 pounds and is incredibly easy going.  He hardly ever cries and loves to sleep! 

Bennett goes to sleep at 8pm and will wake up around 9am.  He'll eat, play and then go back to sleep for a few hours in the morning.  He'll wake up for lunch and be awake for a few hours before his afternoon nap.  He's up for dinner before retiring for the night.  Sometimes, we can't believe how easy a baby he is!
Bennett is now really interested in toys.  If he can get his hands on it, he wants it: your necklace, your drink, your keys.  He enjoys playing with anything usually ends up putting it in his mouth.

He's very curious and particularly loves to watch Oliver play, sing and dance.

Big blue eyes.
Bennett prefers his back but will sometimes roll over on this tummy...with one condition...

...that he doesn't lie on his g-button.  He is adamant that, if he rolls over, he will not fully lie on his tummy.  Notice his poor little left leg in the air to prevent him from lying completely on his belly.  We try to help make his g-button more comfortable but we're not sure what else to do.  We predict he's likely to learn how to crawl without ever lying on his belly.

Such a serious face. 

Happy 7 month, sweet Bennett-bear!