27 February 2010

Bennett's Brigade Tshirt Color/Ink Color

Well, the people have spoken! :)

With 38% of the vote, Iris (a lighter blue) color has won out over the Kelly Green which had 27% of the vote, as well as the numerous other colors which could have been chosen.

Now, for the ink color...

To keep the shirts cost effective, we are limiting the number of shirt ink colors to one.  We picked three of our favorite coordinating colors.  If there is a color that we might be missing out on, let us know.  We need a picture, however, to show us how it would look.

Which one is your favorite? (see examples below)
* White
* Blue (a slightly darker/complimentary color to the tshirt)
* Brown

Here are some examples of what the colors might look like:

White on Blue

Blue on Blue

Brown on Blue

25 February 2010

Say Yes To Drugs!

There was some big CF news this week.

After many years of research, a special CF drug called "Cayston" has just received FDA approval to be used for CF patients.  CF patients, who battle recurrent lung infections, often develop a resistance to existing antibiotics.  Therefore, this inhaled drug offers an alternative - another drug as arsenal against infections - which is wonderful!

The Cystic Fibrosis Foundation is the one who funds most of these drug trials.  And that money for science is gathered through fundraisers like the Great Strides Walk.

There are alot of really exciting drugs being developed for CF right now.  One of the things we really enjoy looking at often is the Cystic Fibrosis Foundation's Drug Development Pipeline, which shows which drugs are in development and how far they are from getting to Bennett!!

(we lifted this image from the website; to understand this chart, click here.)

We are already using AquaADEKS and Pacrelipase Products/Enzymes (both in green).  We will most likely use the Hypertonic Saline (in blue) soon.  And TOBI (in red) is a staple of CF care these days.

Look in the yellow...that's our most hopeful effort to see a cure.  Gene therapy, which had been the hope years ago, did not end up working as the scientists thought.  So, at this point, everyone is watching the CFTR modulation (aka that which is in the yellow)

The bottom line is medications are on their way to help us extend Bennett's life, which is so exciting!!

24 February 2010

Update - Bennett's First Cold, Part 6

Bennett is doing much better today.  Bennett is completely back to normal except for a very small wheezing sound that can be heard only at certain times.  It's hard to know if it's wheezing or if it's just his normal noisy breathing due to his tracheomalacia.  We suppose the doctor will tell us that at whatever point she directs us to come for an appointment.

In the meantime, Breck's father has given us a stethoscope to use so that we can begin learning what breathing sounds are normal and which ones are not.  While this will certainly not take the place of a doctor who has been trained to do this, it will help us to notice breathing sounds that could be an indication that something is going on in Bennett's lungs.

The Synagis Shot

One of the first things we learned with Bennett was diagnosed with CF was how important the Synagis shot was.  The Synagis shot is a monthly injection designed to help protect high risk babies from severe RSV disease during the RSV season.  Since Bennett has chronic lung disease, Bennett's doctors recommend that he get the shot from November until March until he is 2 years old (basically this winter and next).

Bennett was able to get the shot in November and December but he maxed out our insurance prescription coverage by January (only 4 months into the policy!) and was unable to get the shot during January and February.

Since one shot costs $1700 and we need 6 per year, we were unable to pay out of pocket.  And needless to say, insurance companies do not often want to pay it unless they absolutely have to.  

Obviously, we were really disappointed when we learned Bennett has RSV since we know that had he had the shot, he might not have gotten sick.  But we have since learned that many insurance companies deny the Synagis shot for CF patients.  Unfortunately, the American Association of Pediatrics does not yet fully recommend that the Synagis shot be given to CF patients since studies are still limited on the real danger RSV causes on CF lungs.  (Too bad that if are wrong, our children are may be suffering from the scarring of their lungs.)

We have spent the last few months trying to figure out alternative ways to get the shot covered.  And fortunately, today we were told that our doctor's office may have found a new way of being able to get the shot for Bennett.  We are excited about this as we understand a baby can get RSV repeatedly during the same winter.  He should get one more shot in March and then will, hopefully, be set up to get the needed shots next winter.


23 February 2010

Video: Oliver and Bennett Play Together

Breck took this video today.  We thought it was really sweet watching the boys play together and really enjoy a toy together for the first time.  This is also Bennett's first time to really enjoy his Jumperoo.  (Bennett has not previously moved his legs much while in the Jumperoo so he had no idea that he could bounce himself.  But today he got it.)

Then, big brother Oliver decided that Bennett might have more fun (or at least he would) if he made Bennett jump.  So, this is the video Breck captured.  Don't be fooled by the fact Bennett looks like a rag doll during all of this.  Right after Breck turned off the camera, Bennett gave a huge grin.  Seems he liked it too. :)

Update - Bennett's First Cold, Part 5

Bennett seems to be improving daily.  Bennett is still wheezing but is breathing almost completely normally.

We called to notify our CF clinic that he is still sick today, though.  They wanted to hear back to find out how he's doing.  They said that there are alot of viruses going around so it makes sense that he's got RSV.  They also warned us to watch out for the stomach bug floating around.  This makes us feel better about hibernating at home this winter despite that we are getting stir-crazy - none of us want that stuff!

It's so nice to know our CF doctor is monitoring him from afar.  We use our local pediatrician for those things we can do locally.  But it's nice to know our specialist in Fort Worth is only a phone call away and is closing monitoring Bennett's progress.  Dr. Dambro wants us to continue his meds for another few days and then, call back with an update on Thursday.

We can see why colds, viruses and respiratory infections can be worrisome.  Each time he gets something in his lungs, there is fear that it will scar the lungs.  And, honestly, each time he gets something, the lung disease has the potential to progress more.  It's unrealistic to think Bennett can never get lung infections.  But it seems to be making more and more sense to us why keeping him well is so important.  For example, we recently purchased a sterilizer for his nebulizer equipment.  We are now sterilizing his equipment daily to keep him from breathing in bacteria.  We also want to be very cautious with him around cigarette smoke, mold and other things that would compromise his ability to breathe.  We are still learning how to provide the best enviroment for Bennett.  At this point, the best thing is just to help him heal!

21 February 2010

Update - Bennett's First Cold, part 4

Bennett seems to be doing a bit better.  He is still wheezing and has shallow breaths/retractions.  But overall, he seems to be improving little by little.  The main thing we notice is our little one is showing more and more of his personality - which means he feels better.  Since RSV is highly contagious, we'll be staying home a bit longer.  But we hope his breathing will clear up in the next week.

Since Bennett has not been feeling well over the last 1.5 weeks, we haven't seen how much he is growing cognitively.  However, the in the last two days, as he has felt better, we have noticed his efforts to roll over (from back to front) and his efforts to hold on to/grab toys.  In many ways, he acts more like a 2-3 month old than a 4-5 month old.  But we know that his being so sick has consistently held him back.  His body can't discover the world around him when it's fighting to heal.

Nonetheless, we are enjoying our little sack of sugar. :)

20 February 2010

Pictures - 20 Weeks Old

Who would ever think our little bear is sick?  
Here our little chubby boy is happily posing for some Mommarazzi pictures.

Getting so big!

Those baby blues!

Just kickin' it.

19 February 2010

Update - Bennett's First Cold, part 3

The bad news is, as of Friday night, Bennett has not improved.  He is still struggling to breathe, having retractions (where one sucks in so far that you can see their ribs) and is wheezing.  The good news is, however, Bennett has not gotten worse.

The bad news is Bennett likely has the virus RSV.  The good news is we are and have been treating it as best we can so the doctor feels that he will likely pull out just fine.

Treating him for RSV, the doctor recommends that we continue to monitor him and watch for signs that he is improving.  RSV lasts about 1-2 weeks.  RSV typically does not respond to asmatic medications (such as the nebulizer and antibiotics) but will improve on his own.  Since it's a virus, there is not much else we can do.

However, having RSV in such a youngster such as Bennett - esp. a youngster with chronic lung disease - he is at risk for developing pneumonia or something else as a secondary infection.

For now, Bennett seems to be feeling well.  He is smiling through his struggle to breath and overall is very peaceful.  It hurts us to even think how hard his lungs are having to work.  But doesn't seem to be worried about it at all.  What a trooper!

We will continue to pray that God will help our little one breathe.

Bennett's Brigade Tshirt Design

Well, it was close but Design 2 won with 53% of the vote.  And our friend Liz has completed Bennett's Brigade design. 

We asked her to add a verse we think is appropriate for Bennett in light of his CF diagnosis.  And, we added the walk's name: Great Strides for Cystic Fibrosis.  We think it looks so good!  (Click to enlarge)

But, we have more decisions to be made.  And we need help!  We've put a new poll at the top of the blog.

Which tshirt color should we use?  (Click the picture below to enlarge the colors)

* Cardinal Red
* Iris (A lighter blue)
* Royal Blue
* Kelly Green
* Orange
* Gold

Once we get the tshirt color down, we'll then go to choosing the color of the design on the tshirt.  Goodness, so many things to figure out! :)

18 February 2010

Update - Bennett's First Cold, part 2

Well, as we suspected, this cold is a bit different than the colds Oliver caught when he was a baby.

Bennett is really struggling to breathe through his cold.  The cold started out last week with him just being snotty and seeming to have some extra mucus in his chest.  With a wait and see approach (guided by our CF Clinic), we increased his nebulizer to every 4 hours during the day.

When we saw that he had green snot over the weekend, the doctors agreed we should start him on Bactrim antibiotic to help him should he have an infection.  We were told to continue his nebulizer/allbuterol/CPT treatments every 4 hours during the day.  Since he got sick last week, he hasn't been hungry at all so we have fed him through his g-tube soley (thank goodness for that G-tube!!).

Bennett hasn't been feeling well since last weekend.  And yesterday, we began to hear more of a wet cough.  It was then that we began to recognize just how difficult he was finding it to breathe.  His breaths are deep as he makes an effort to push air through his constricted lungs.

By last evening, we began to hear wheezing.  The CF doctor called in some Prednisone steriods for him to see if we could help him not have to work so hard to breathe.  It hasn't improved him much but we hope we will see the effects of it soon.

Right now, he is breathing so hard that you can see his ribs when he takes a breath.  It's pretty scary to watch.  But the doctor reassured us that as long as he is feeling well, he should be ok and we are doing everything we can.

One change the doctor made today was the instruction to give Bennett his nebulizer/allbuterol treatments every four hours - including through the night.  We must do this until he improves.  Another change that was made is that Bennett is now on a more powerful antibiotic, Augmentin.

We are really watching him - knowing things could change for the better or worse at any time.  For now, however, he seems comfortable and doing well.  We just want to help him stop having to work so hard just to force the air in his lungs.

We are hoping this is just a cold and has not turned in to RSV.  For now, the doctor feels that he should begin improving in the next 24-48 hours.  We should see him dramatically improve by Sunday.  Let's hope!

16 February 2010

Update - Bennett's First Cold

We are in the midst of Bennett's first cold.  Normally, this would not be a momentous occassion on one's life or one's family.  But it is in ours.  Mainly because it's our first time to experience a CF cold.

A CF cold means that we have increased his CPT (Chest Physical Therapy) and Nebulizer/Allbuterol to every 4 hours (fortunately, we don't have to do it throughout the night).  And it means we are very vigilant to watch this cold to make sure it does not develop into anything other than that.   There is always an increased risk for it to turn into pneumonia.

It is amazing how much his nebulizer works to help him breathe.  It is rewarding to use when you can tell it helps him so much.  (We let him keep his pacifier in his mouth since babies breathe primarily through their nose anyway.  This also helps Bennett stay calm as we keep the mask on his face.)

Since he's had some green snot and a cough, he has been placed on antibiotics.  We have already seen improvement during the last day or two.

While it's inconvenient to have to stop and find a plug for the machine every four hours, we have enjoyed the cuddle time with our sick boy.  He is so sweet and often falls asleep during his "treatments."  Big brother Oliver enjoys turning the machine on and off for us.  We suppose it's a win-win for all.

Breck's Thoughts: Please don't enter here.

We weren't prepared for the fragility of Bennett's health when we learned of his illness.  But soon the reality of it hit us and we learned to cope.  We began the process of preparing for the life of our little one to be taken from us.  It would not be easy, we knew.  But we could at least prepare ourselves.

Honestly, I began that preparation long before Bennett.  Even as Brian and I parked our car at Durham Regional Hospital and began walking up to the front automatic hospital doors ready to for the 6pm induction of our first son, I prepared myself.  My hope was to bring our much anticipated baby Oliver home.  But I was keenly aware that healthy deliveries are not guaranteed.

Fortunately, Oliver's birth went wonderfully and my greatest fears did not come to pass.  But even as Bennett's day of birth drew nearer, I reminded myself again that sometimes newborns die.

I was preparing myself even in the lonely moments of sitting by myself in the admission room waiting for Brian to join me as I requested that the hospital tell me why I wasn't feeling the baby move.   "The baby may never move again," I told myself.  "And I have to be prepared for that."

But the shock I soon realized was not a stillbirth but a diagnosis: my second son was born with a genetic disease that would slowly make it impossible for him to breathe.  With no cure, his lungs would eventually prematurely stop working.  And the life of my son, as well as my family was just about to be turned upside down.

Fast forward to this moment.  I find myself conflicted over a feeling I feel so guilty for even having.  And yet, it is only right for me to acknowledge it.  It would be much easier, I think, for me to say goodbye to Bennett much easier than to do so when he is 2...or 5...or 10...or 17...or 40.  I'm prepared now.  I won't be prepared then, I know.

If I lose him now, I will lose what I never realized.  But if I lose him later, I will realize exactly what I lost.

I listen for his breaths (you don't have to put your hand on Bennett's chest - his breaths are noisy).  Is he breathing?  My heart stops - just like so many mothers of infants who ask the same thing longing to see the chest go up and down.  I hear a breath and I know he's fine.  I am able to move about my day.

But I think about the moment when I hear a breath no longer.  And my heart aches.  To live a life of such distress over small things like weight gain, fear of illness, becoming resistant to medication, breath tests, lung transplants.  I am not prepared for that...especially for the death that will follow at some point - after I have fully fallen in love, not with a baby but with a boy and hopefully a man.

I feel like I have just barely crossed the starting line.  We're only 4 months into his life - into this journey.  And yet, I want to stop and say to God,

"No! I don't want to do this!  It's going to be way to painful.  Please, don't make me enter this place.  Don't allow me to love and be forced to see this love taken away.  I can do it now...which it isn't as painful.  But each day that goes by, I love more.  And each day that goes by, Bennett is more aware, knows more about his world, feels and remembers pain more.  This isn't what I want to do."

But in this, I am reminded that THIS is what it means in Romans 8:22 when it says, "We know that the whole creation has been groaning as in the pains of childbirth right up to the present time.  Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies."

This is what it means to long for be aware of the decay of the world.  People aren't supposed to get sick.  And people aren't supposed to die.  I am not supposed to hurt.  This isn't the way it was supposed to be.  It is not as God intended it.

Heaven is the place where the sick will be well and the dead will be alive.  There will be no pain anymore.

My tears are my own groaning as I wait for things to be made right I wait for God to fix that which is broken.

Pain, I do not like you.  I do not want to be near you.  But so I am called to love with abandonment and trust that God is good.  Only He determines my son's breaths.

And so while I groan, I will also choose to love.

14 February 2010

Breck's Thoughts: Spiral Feelings

Our friends Tim and Cynthia taught us a bit about grieving two years ago when we walked with them through the unexpected sudden death of their newborn.

There were many things we observed and experienced with them during their grief.  But one of the most valuable things I remember learning during that time was specifically about the grief process.

I learned that grief is not necessarily about going through "stages," linear single feelings or experiences  Instead, grief is more like going through a complex "spiral" in which one moves in and out of the feelings of grief as time moves on.

Ironically, I find this valuable now as I sort through my own feelings... 

It has been 4 months since we first learned of Bennett's diagnosis.  And yet, I still find moments where I feel shocked that we have a child with Cystic Fibrosis.

It has been 3 months since we started providing him CF care (such as enzymes, CPT, medications, etc).  And yet, I still find moments when my heart desperately doesn't want to accept the increased burden required to take to care for him.

It has been 2 months since Bennett was last admitted to the hospital.  And yet, I still feel disappointment and sadness over how fragile his health will always be.

Bennett is thriving and brings to us pure joy.  So, I have recently been surprised to see myself feel some of the same feelings I felt months ago: shock, denial, disappointment and sadness.

But if I remember what our friends taught us and modeled for us over the last two years, I will know that this is normal.  And this is part of what it means to grieve.

Years ago, a wise counselor of mine told me that "grieving demonstrates something matters."  He said, "when you grieve, you are admitting that what has been given up mattered."  And if I am most honest with myself, I would admit that Bennett being a healthy child matters.  Bennett's freedom to live without intrusive doctors appointments and procedures matters.  Bennett being able to become a grandfather matters. 

I believe grief only comes to the surface when you are ready.  And so, it is apt, that these feelings should arise now.  Life is so peaceful for us now.  I am no longer in "crisis" mode.  And because of that, my feelings are finding the space to be felt, grieved and dealt with they will continue to do throughout my whole life.

The feeling of acceptance is also a part of this new mixture of feelings that exists.  While, once again, I feel disappointment, sadness, shock and denial, once again, I feel acceptance.  Because to accept I am where I am is to believe that God is in control.

I can feel all of these very real and very human feelings of pain.  But I can also come to a place of peace, where I accept that God's hand is in this situation - and that there is a divine intervention despite the fact that I do not even fully understand it.

So, while I wish the tears and fears would once again subside, I am choosing to welcome these feelings once more.  They are nothing to be ashamed of or to be feared.  Feelings are always good.

But in the midst of this ongoing spiral, I can also say: this is where I have been placed - and despite the shock, disappointment, sadness and denial - for this I can be glad.

May my meditation be pleasing to him, as I rejoice in the LORD.  Psalm 104:34

Final Votes For Bennett Brigade's 2010 Tshirts Are Being Made...

Only a few more hours left.  If you haven't voted, go for it!  This is going to be a close tie!

Design 2 or Design 3??  Which will it be?

13 February 2010

Bennett's Scar of Bravery

Bennett will always have a scar down his abdomen from the middle of his chest to his belly button.  It will probably fade over time but it will always be there.

The bottom part of the scar is from his first surgery.  The top part (the reddish part) is from his last surgery (the "Humpty Dumpty" one).

We have decided to call this scar, Bennett's Scar of Bravery.  We hope that we can use it to tell Bennett the story of his early and successful fight against CF.  It is never something to be ashamed of.  Instead, it is something to be very proud of (with humbleness, of course).  Bennett will have many many doctors appointments, procedures and hospitalizations over the course of his lifetime in his battle against Cystic Fibrosis.  We hope that we will be able to reassure him that he is a brave boy by reminding him that he was given a scar of bravery.

11 February 2010

Day in the Life - Hanging around the house

Here are a few pictures we have taken in the last few weeks.  These are pictures taken of Bennett hanging around the house.

Baby Roo:  Momma takes a picture through the living room mirror.  Bennett is hanging out in his backpack-frontpack-pouch-thingy.

Nibbling on some good fingers.

Literally "hanging" in the Jumperoo. 

He's a bit too small so we stuck blankets in front and behind him to prop him up.

He's a bit too short, too.

Laying back and watching the birds toys.

  Handling some tummy time.  Trying to keep that heavy head up!

Smiling at momma behind the camera.

09 February 2010

Update - February 9, 2009

Bennett continues to thrive these days.  In the past two weeks, we have met with Bennett's Pediatrician and Pulmonologist. 

At Bennett's 4 Month Pediatrician appointment, we were very happy to see that Bennett is growing along the growth chart curve.  He is now in the 10th percentile for weight and for height!!  His head is in the 1st percentile but we aren't too worried about that.

We are happy to hear more and more comments from friends and random people who we meet throughout the week that Bennett "looks healthy" or "is getting chubby."  This is reassuring to us that others are seeing what we are seeing in Bennett - he's thriving.

Bennett has not hit some of the milestones we would expect he likely would have hit on time if he hadn't been so sick so early in his life.  He cannot yet roll over and does not bring toys to his mouth yet.  He also does not want to put any weight on his feet.  From what we understand, this is typical behavior for 3 month olds.  So, we are considering Bennett to be about a month behind his peers.

But, he is tolerating being placed on his tummy more and more.  So, we're waiting for him to do the rollover at some point soon.  He does play with toys, he just doesn't have any interest of having toys in his mouth.  He's much more interested in gnawing on his hands.

We have been told by his therapists that Bennett can be up to two months behind before being considered delayed.  We have been told to rest assured that this is normal for a child who has experienced so much hospitalization and sickness.  But, we still long for him to hit his milestones as soon as possible.

Bennett's temperment is starting to become more and more apparent to us.  He is an incredibly laid back baby.  He rarely cries anymore (now that he is tolerating his feeds) and is a fabulous sleeper.   He is easy to make smile and loves most when he is kissed on the side of his neck (if you can find it!).

All in all, life around here is getting pretty normal - even boring.  And we *LOVE* it!

We continue to thank God for health and peace!

Pictures from Bennett's Newborn Photo Session...4 Months Late

One of our favorite people from Brian's masters program at Duke Divinity School is his former classmate, Jess Wong.  Jess is the first person we met when we moved to North Carolina four years ago and one with whom we have continued to keep in touch.

While she continues to study for her PhD in Religion at Duke, her parents live in Dallas (coincentially near Breck's sister, Brook-Lyn). When we moved to Waco this year, we were excited, among other things, to be closer to Jess' family, whom we have come to love.

Jess' father is a professional photographer who said months before Bennett was born that he would be willing to photograph Bennett's newborn pictures for us.  So, understandably, we were disappointed when Bennett wasn't able to come home immediately after his birth and missed the opportunity to have newborn pictures made.  But John reassured us that he would be ready when we were.

So, this weekend, we *finally* had a chance to meet with John to take Bennett's photographs.  We were so very excited because this man does amazing work!

In addition, Brook-Lyn, Breck's sister was so kind to come with us on the shoot to help entertain Oliver and be an overall helper to us.  We also cherished the opportunity to get to see her.  While we were busy, Brook happily took a few shots of our photo session for us by which to remember the day.  These shots may be a bit blurry but we didn't want our camera's flash to ruin the beautiful pictures John was taking.

We look forward to seeing the final product soon!

Breck and Bennett talk to Cindy, John's wife, who came to help with the photo shoot.  Cindy is such a lovely person and really cares for us like a second mother.  John gets everything ready in the background. 

All the clothes hung up and ready.

Breck makes silly faces and talks to Bennett in a high pitched voice - an effort to get Bennett to smile.  Poor John had to listen to it...right in his ear.  :)

Oliver gets a few shots by himself.  You can see that in this picture he is actually using "sign language" for please (hand in a circle on his chest) as he says "cheese."  He is smiling while also asking for candy...our bribe for a very very patient boy!

Breck holds up candy and toys to get smiles of Oliver and Bennett (who are taking a few pictures with Daddy).  Cindy watches on.

This isn't a good picture but it's a hint of what we look forward to seeing in the proofs!

After our photo shoot, the Wongs took us all to a delicious restaurant in Dallas.  There generosity was overwhelming.  (We missed not getting to see Jess but she's studying hard back in North Carolina these days.)

Thank you, John and Cindy!  You are such a blessing to us. 

08 February 2010

Uh-Oh. It's a tie.

Well, all week they've been competing, T-shirt Design 2 and 3...

We kept thinking that one design might just pull ahead but Design 1 seemed to split the vote.

We ended with Design 1 with 26% of the vote.  Design 2 and 3 with 36% of the vote.

So, we have no other recourse but to do a tie breaker to see what shirt design Bennett's Brigade will be wearing this year for the Great Strides Cystic Fibrosis Walk in Waco on April 17.

The polls will be open for another few days.  If you already voted in the last election, do it again!  Which is your favorite? 

Design 2....or Design 3?

Remember, click the images to make them bigger.   (Do note that the year 2009 will be changed to 2010.  And, while Design 1 is shown, it is no longer an option.)


04 February 2010

Baby Parts

Getting chubbier.

Sweet feet.
Missing a neck. :)

Baby face.


02 February 2010

4 Months (17 Weeks Old)

Bennett turned 4 months old on January 30.  While unable to do it for very long due to weak neck muscles, Bennett enjoys sitting up in his Bumbo and watching the world around him.