Well, now that we've accepted we have a child with Cystic Fibrosis...
and we've decided to embrace that we will be participating in the annual Cystic Fibrosis walk here in Waco...

we've decided to make the best of it and have a great time raising money to find a cure for our son!

One of the things we have learned that many CF families do for the Great Strides Walk is to make team t-shirts.  So, we asked our dear friend Liz Bayless (a graphic artist who has experience designing t-shirts) to design this year's t-shirt for us. 

We love all three designs and couldn't decide which one so we've put up a poll on our blog so we can find out what Bennett's Brigade thinks.   If you will, decide which is your favorite design and vote in the poll on the right top side of the blog.

Click the images to make them bigger.   (Do note that the year 2009 will be changed to 2010.)  

During an OBGYN appointment today, Breck had a chance to see Bennett's delivery doctor, Dr. Bachofen, for the first time since Bennett was born.

We hadn't seen Dr. Bachofen since the moment when she sat next to Breck on her hospital bed and told her she'd discharge Breck from the hospital (only 12 hours after giving birth) because Bennett was being transferred to Temple for emergency pediatric surgery.

It was so exciting to see Dr. Bachofen.  Breck enjoyed being able to show Bennett off as well as to say thank you again in person to the doctor who listened to her fears and decided to go ahead and induce the baby early.  Dr. Bachofen was amazing at not ever really letting us know that she was concerned for Bennett's welfare.

This is why Breck was most interested in asking Dr. Bachofen her burning questions: "You were there at his birth, Dr. Bachofen. Were you worried that he would make it?"

Dr. Bachofen answered, "Yes.  I didn't think he was going to make it.  I was sick when I heard he had Meconium Peritonitis - the fact that his colon had ruptured. Yes, I was completely worried.  I didn't think he was going to make it."

Breck said: "He was supposed to be born on Friday but I came in on Wednesday morning with concerns he wasn't moving. I don't think he would have made it until Friday. Do you?

"No," she replied while shaking her head and looking down. "I do not think he would have made it."

Wow.

We had felt this was the case.  We had felt that he was critically sick.  But to hear it from the doctor who was there was a reminder of the gift we were given.

This visit with Dr. Bachofen came on the heels of learning another one of Breck's friends lost her baby at 38 weeks pregnant.

We feel like we skirted death.  And we have no idea why we are left so fortunate to have our baby alive and well.

Our hearts skip a beat as we are reminded how nothing is promised.  Children are gifts given to us on borrowed time.

This is all the more why we have chosen to stop looking at Cystic Fibrosis' short life expectancy as heartbreaking but instead look at it as a gift we almost didn't receive.

Here is a video of Bennett "chatting" up a storm. He was sitting on Breck's lap after a diaper change when he started talking up a storm. So, we promptly took out the camera to catch it. (sorry, we also promptly turned off the camera at the end when he started to gag after just eating. :))

Oliver has a sweet friend named Roy, who is about 9 months older than Oliver.  He is the son of our friends Lindsay and Josh, who came to visit us at the hospital before Christmas when Bennett had his last surgery.  Roy is a very precocious 2-year old who happens to also be very tenderhearted.  While Oliver is fairly unaware of Bennett's issues, Roy has asked alot of questions and seems particularly interested in watching us feed Bennett through his G-button.  This is why we had to share this story his mother recently shared with us:

"Yesterday while driving Roy and I noticed a cat that had been hit by a car laying in the road. Roy was very distressed by it and was exclaiming in his sad voice (his sad voice is really pitiful sounding) "That's so sad mommy, that kitty got hurt." I agreed with him and thought I'd take advantage of this teaching moment, I told him that the kitty had been hit by a car and "that's why we need to be very careful when we're around cars so that we don't get hurt." His reply was "Yeah, then I might have to get a G-button."

Poor kid thinks hospital visits equal G-buttons. :)

Today, Bennett had a follow up appointment with Dr. Hamner, the surgeon in Fort Worth. 

Everything looks much better.  His scar is healing fine (especially now that the stitches are all out or have dissolved in his skin).  His G-button is looking great but we will continue to put the medication on it to keep the skin from growing up and becoming sensitive to the touch.  We will return in a month. 

The appointment took 15 minutes.  While it's a far drive to make for 15 minutes, we prefer those appointments - no drama and lots of smiles!

Life has returned to a normal similar to the one we knew before Bennett.  But, of course, it is enriched with our new little life who is growing up before our eyes.

And yet, the past three months are still seared on our memory.  I was curling my hair the other day in the bathroom.  Oliver was up on his little stool at the sink "brushing his teeth" (aka sucking water out of his toddler toothbrush) and Bennett was asleep on the mat I had laid down for him on the bathroom floor.  In the background played Oliver's toddler CD of children's Bible songs.

It's easy to get lost on your thoughts when you're doing something as mundane and repetitive as curling your hair, so it's no surprise that I began daydreaming a series of consecutive thoughts:
who I needed to email back...including our friend Anne...Anne's co-worker Joe who sent us a sweet note...all the kind friends we have who have come out recently to support us over the last few months...all of the cards and gifts we have received as tangible signs of their love...how I am blessed....so, so blessed.

And then, the thought...

I am truly one of the most fortunate people in the world. 

The other day, I walked past a framed piece of art in the Christian bookstore that said, "Jesus learned obedience in the wilderness."  These words popped off the framed picture.

I felt like it could have said, "Breck is learning obedience in the wilderness."  Or even, "Breck is learning the depth of God's love in the wilderness."

I would never never never wish to again experience what we have with Cystic Fibrosis.  And with all of my heart, I wish that God would take CF away from us.  No mother wants to see her child live his life suffering.

But deep within me, I know that it is through this suffering and pain that I have been able to experience God's love in a way I never would otherwise.

The massive amount of people who have come out to offer their help is absolutely overwhelming...  People like the couple, who we've yet to be able to personally thank, who purchased us a freezer right after Bennett's birth so we could keep my pumped milk and the frozen meals we were being given...
People like the couple, who for three months, made sure our lawn was cut so we did not have to worry about such meaningless things...
People like the young woman, who I hardly know and I haven't seen in years and doesn't know Bennett but yet found me on Facebook a week ago and donated money in Bennett's name to help find a cure for Cystic Fibrosis.
People who gave us gas cards, gift cards to fast food restaurants and written notes of sympathy...
People who gave us grace with school papers, deadlines and overdue work projects...
People who offer us a space to laugh as well as cry.

The ocean is not deep enough and wide enough to hold all of the love we received.  It is overwhelming.

I'm tempted to say I'm thankful for CF.  But, let's be honest, I'm not necessary thankful for a disease that will slowly crush my child's lungs, making it impossible for him to breathe.

But I can say that, as Thessalonians 5:18 says "Be thankful in all things," I am thankful for the wilderness that I have been placed in.... 

...because, regardless of how I got to the wilderness, I am confidence that I am more blessed now than when I entered it.

Bennett is doing really well these days.  He is *such* a peaceful and sweet baby.  He is sleeping through the night most of the time, with us having to change out his feeding pump bag once during the night.  He tends to sleep for most of the morning and early afternoon but likes to be awake in the evenings.

He is very smiley.  Breck can look at him from across the room and he'll shoot her his pearly whites toothless gums.  We love to kiss his cheeks and neck most.  He really gets grinning when we do that.  We feel like he'll push out a laugh soon.

Since Breck is home with him most of the day, she gets to see his progress the most.  Yesterday, Oliver was down for his nap and she was busy on the phone.  All of the sudden, she heard the toy on Bennett's play pallet make a noise.  She looked over in shock to see Bennett had reached up and was playing with the toy.  His ability to grab and play with things has increased rapidly in the last week.

Bennett is now holding up his head better than ever.  He even handled being placed on his tummy yesterday!

We are pretty sure that the reason for his difficulties regarding the G-button is that the skin under the button has been growing up and becoming irritated.  When we met with the surgeon last, he cauterized the skin and has given us a prescription ointment to keep the skin from growing up.  It seems to be working as of now.  We will continue to put him on his tummy and encourage him to roll.  However, we know he will do so in his own timing.

Bennett showed some congestion this week.  We have been giving him Albuterol through his nebulizer to help open up his airways.  Afterwards, we do his CPT.  We have begun doing this twice per day.  It seems to be working and he seems to be less congested because of this.  We hope or proactiveness will help his lungs will stay clear.   If, for some reason, his congestion does not go away, we will have to increase our measures to four times a day.  But hopefully he will continue to improve.

We are so thankful for Bennett's health and to see Bennett continue to grow.
Every day is a gift.  Every. single. day.

 Another item that is unique to Bennett's room is a picture frame we purchased shortly after his birth.


This picture frame as a picture of Bennett in it.  It was the only reminder we had of Bennett in his room for the 5 weeks after his birth.  We enjoyed looking at his picture as we anxiously waited for him to come home.  The frame still sits next to a Mother Goose figurine and some children's books on his chest-of-drawers.


As we turn out this light each night, we are reminded how lonely and hallow this room once felt - and how much more alive it feels today.  We are so thankful that our little one is with us and thriving.  Soon, this room will be full of toys scattered across the floor.  We can't wait. (P.S. another gift for Bennett hangs on the closet door.  It's hard to see but it was a gift from our friend Carrie who also makes beautiful crafts at Name Drop.)

If you watched Bennett's video, you'll see that we have invited you to walk with us.

We are walking at the annual Great Strides Cystic Fibrosis Walk in Waco on April 17, 2010.

We have really wrestled with what it means to participate this year.  For us, it is simply to be there...to publicly acknowledge - mostly to ourselves - that we have joined (like it or not) a community that nobody wants to be a part of.  But mainly, we want to walk for Bennett - to be able to one day tell him that he does not have to fight CF alone - it started way before he even knew he had the disease.

We didn't choose to have CF affect our family. But we are going to choose to fight this monster that is taking away too many young lives...and is compromising the life of our little loved one.

So, even though our Great Strides website (something free we get through the CF Foundation) has a listed fundraising goal, the reality is our greatest goal is just simply to participate...and hopefully to do so with friends.

If anyone would like to get some exercise and come laugh (and maybe even cry) with friends, please consider joining us.  Bennett's Brigade, call up the troops! :)

Go to our Great Strides website and click "Join our team."  Or, just show up.

We have created this video to document Bennett's birth - as well as struggle with CF.   We thought a video would be a good way to share our story.

Cystic Fibrosis patients cannot be within 3 feet of each other.

This means Bennett cannot have CF friends for playdates.  We must be thoughtful about sitting too close to other CF patients in the waiting room at our Pulmonology appointments.  And CF summer camps no longer exist.

This is because only a few years ago, doctors realized that CF patients were unknowingly transferring respiratory illnesses between each other...illnesses that only CF patients get...illnesses that once acquired cannot be gotten rid of.

So, as parents, the only contact we have had with CF families have been over the phone, through email and blogs.  This works but is certainly not as nice as meeting in person.  There is no issue with us meeting with other CF families, but we cannot bring Bennett along, so we have found alternative ways to communicate.

This is why one "a facebook for CFers" is a really cool idea.  Just this week, a Facebook like website came online called "Cystic Life".  It is really well done and offers a much easier way to communicate with both parents and those with CF.

CysticLife.com is probably more like a hybrid of a facebook, blog and forum.  But it works well and offers a sense of community.  We have already gotten some great ideas regarding how to help Bennett and been able to ask questions important to us.

It's funny how CF has become part of our daily life in so so many ways.

Today was Bennett's surgery follow up appointment since his reanastamosis (aka "Humpty Dumpty Surgery").  The doctor was fairly pleased.  The only concern was that Vicroyl stitches that were used to sew Bennett up were rejected by his body. 

We hadn't realized this but it makes sense now as there were several scabs on Bennett's scar that did look like there might be something wrong.  But they looked like they were going away so we had no idea.  They had been like that since the bandage came off several weeks ago.  Apparently, the scabs were the body rejecting the stiches.

So, to Breck's disappointment, at Bennett's clinic appointment, the Surgeon (Dr. Hamner) had to pull off the scabs and retrieve the stitches still in his wound.  Breck, who took Bennett to his appointment, hates blood so having to hold Bennett's legs and watch the Surgeon do this was pretty difficult. 

The Surgeon was really understanding towards Bennett and tried to do it as quickly as possible.  He was able to extract all of the stitches that had not dissolved in Bennett's skin.  We are to put Neosporin on it and keep it clean from infection.

The Surgeon also cauterized the skin under Bennett's G-button.  The doctor feels this may be why it is so sensitive.  He also prescribed some medication to help his skin stop growing up (??) into the G-button.  We aren't really sure what the deal is.  But we know that the Surgeon thinks this will solve the problem.  We hope!

We'll be back in two weeks so check back in.

This week is full of follow up appointments.  Today was Bennett's Pulmonology Follow Up in Waco (we are so fortunate that our doctor comes to Waco once a month!).  Bennett looked great and there were no concerns. 

Bennett weighed 10 lbs and 5.3 ounces keeping him in the 5th percentile.  He should be around 13 lbs right now.  His head circumference is 38 cm, around the 3rd percentile.  However, he is moving along the growth curve in both areas so this is good. 


Our lean bean seems to be growing longer.  His length was 23 3/8 inches, which is in the 30th percentile (up from 10th percentile last month).

We will have another follow up with the Pulmonogist in Waco next month and then see the doctor in Fort Worth the following month.  Visits in Waco are usually very short "well" visits with the doctor only.  However, our visits in Fort Worth tend to be more comprehensive since all of the team (dietician, nurse, child specialist, respiratory therapist, etc.) is there on those visits.

We have two more appointments this week.  Bennett will see the surgeon tomorrow for a follow up.  And on Friday, the ECI therapists will be coming to help us work on helping him meet his milestones.

  We feel SO very fortunate that we are able to get all of these doctor visits and therapy sessions for him so soon in his life.  It feels good that everyone's main goal at this point is to now keep him well, rather than get him well.

It is pretty exciting these days to answer the question: "How is Bennett doing?"  We are finally able to say, "He's doing great!"  This video is proof of how much he has progressed.

* Notice how Bennett's little right ear curves into itself.  It happens all of the time and is pretty funny to see.  We call it his "Spock" ear. :)

We had an evaluation with the Occupational Therapist on Monday.  It went great.  A few things that we learned include:
1.) Bennett's G-button is unusually sensitive and sore.  At this time, the therapists are advising that we not put Bennett on his tummy.  We need to talk to his surgeon about that next week. 
2.) We were once again reassured that Bennett is not developmentally delayed.  He is within the normal range, just behind alittle.  This is excellent news!

We have been directed to do the following things to help him hit his milestones on time:
* Present different textures to Bennett with a variety of toys.
* Rub toys/your hands on the back of Bennett's hand to stimulate the extensor tenden muscles which will help to open up his hands and fingers
* Place Bennett on his side to help him reach for toys (do this for both sides); this is in place of tummy time until he is able to lay on his tummy without pain.
* Help Bennett turn from side to side by "driving" his leg sover first to the other side while supporting his back and head.
* When changing Bennett's diaper, stretch his legs and bicycle them.  Stretch his arms as well.
* Continue to offer Bennett a bottle at least a couple of times a day despite that he is being fed primarily through the G-button
* Continue to hold Bennett during tube feedings for bonding.

Bennett turns 14 weeks old today!  So, we celebrated with a "Momma-rrazi" photo shoot. :)






 

Peace.  This was truly a peaceful Christmas.  After all the chaos, heartbreak and shock in the last three months, the past two weeks has been so very peaceful. 

Each time I look at the still healing 3-inch scar on Bennett's belly, I think of how wonderful it is to have our little guy put back together.  Believe it or not, but for me, changing diapers is so enjoyable. (I even caught myself describing to a family member that Bennett's poops smells "sweet" to which my sister quickly explained that in fact it did not.)
The nice thing about holidays is, that on some level, it allows life to be put on hold.  For just a moment, time stands still.  And for us, this is what our Christmas holiday break felt like. 

For two weeks, we had family to help us process, reflect and remember what life has been like recently for us - but to also help us anticipate what is to come.  All the while, our family also gave us some temporary physical relief from the daily care of our children's needs: opportunities to sleep in, help with the crying baby, distracting our two year old while we focus on other things we needed to get done.

We are ready to return to the real world though.  We have arrived back home and are getting in our places - ready to push the "start" button to begin life/school/work once again.

::::Sigh:::: but it feels good...to feel rested and reassured that things do eventually get better.

We are reminded that while things can and will be challenging, nothing lasts forever.  God is good. 

He gives us the strength to handle what we think we cannot.  And he gives us relief when we think we can handle no more.

We have appreciated all of the prayers that have been given up on Bennett's behalf throughout the last three months - and for those who have committed to continue to pray as Bennett will fight this disease all of his life.  

A few months back, our friend Ashleigh had the great idea of creating a virtual "Pray for Bennett" blog button to help people to remember to pray for Bennett.   Many people have posted this button on their blogs, which has meant alot to us.

In fact, we liked this idea so much that we decided to create something similar that people can use in real life: "Pray for Bennett" magnets.  Our friend Beth Courtney sweetly shared her graphic design skills to create a magnet for us to give away to our friends and family.  Our hopes are that this magnet will be a way to help Bennett's Brigade to remember to continue praying. 

They just arrived in the mail so if anyone would like a "Pray for Bennett Brinson Gamel" magnet, just give us your address in the comment box or through an email at breckgamel@yahoo.com and we'll glady send one to you.  Specify if you want more than one.

This is our way of saying thank you for keeping Bennett in your prayers.  We can never really say thank you enough.