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Bennett's Stage Debut

Tuesday, July 18, 2017

This past week Bennett was the center of attention...but, for the first time in a long time, it wasn't for CF:  On Saturday, Bennett made his theatrical debut in his first on-stage community play.

Three pups: A dalmatian (Bennett), a chihuahua and a scottish terrier (our friend Hudson on the end)

Bennett, along with a crew of 50+ kids (ages 7-15), attended theatre camp put on by the Waco Independent School District Theatre Department.  At the end of 5 full days of practicing, dancing and making their own costumes, the kids put on two community performances of "Disney's 101 Dalmatians Kids."  The show was incredibly adorable!

Each child who participated in the camp had a role in the play.  Most kids, like Bennett, were part of the ensemble of Dalmatian puppies.  Some children tried out for speaking roles a few weeks before the camp started (I found out about the camp too late for Bennett to try out). Bennett was hesitant at the beginning of the summer of doing any camps without his brother to be there with him.  But as the summer moved along, Bennett's confidence begin to build.  When I found out about this camp, Bennett agreed he was ready to try something new and all by himself.  

Bennett is on the far right.
Brian and I knew, without a doubt, that Bennett would love theatre camp.  Bennett is incredibly playful, loves to dress up, enjoys making people laugh, has a naturally comedic sense to him and enjoys singing.  

The wonderful thing is we were right.  Bennett did love it.  Bennett even won an award at camp for having the best puppy dog face.  He took the role very seriously. :) 

While I was very excited for Bennett to have a chance to try something new that I knew he would love, I definitely felt anxious.  The camp took very good care of Bennett.  But, more than ever before, Bennett had to remember to take his own CF medicine when he ate several meals at camp (he was mainly good at that).  And, he had to navigate experiences of reading, such as the words to music, despite that his dyslexia prevents him from reading independently just yet.  Despite these challenges, he did great!  And even more fantastic than that, Bennett's past bowel issues were NON ISSUES!  What a huge gift to be able to just enjoy camp without having to be reminded of CF!  

Bennett made lots of sweet friends at Theatre Camp, including one of the older kids, Ellie, who played the lead role of Cruella de Vil.  Bennett loved being around Ellie.  She made him feel really special.

Bennett also really loved hanging out with his friend from church, Syler, who is a few years older than Bennett and took him under his wing during the week.  Syler, a natural-born leader, won an award at camp for being most helpful to the other actors, particularly the younger ones.  

We are grateful to our sweet little friends, Adela and her little brother Gus, who came out to see Bennett in the play.  For me, as his mama, watching Bennett have fun on stage was really enjoyable but watching him doing it while knowing he is healthy was even more gratifying.

Maybe there be many more CF-free curtain calls for you, Bennett! Bravo!

Dear Board Certified Doc, Thank You.

Friday, June 30, 2017

There are quite a few things I haven't yet shared about on the blog that I'm looking forward to sharing soon.  Bennett's issues have taken so much attention this year that, until recently, I hadn't had the emotional energy to post them.  But as Bennett's health continues to do well, life is much more balanced for me and now I can once again excitedly sharing several projects I've been a part of for some time.  This is one of them:

The American Board of Pediatrics is based in Chapel Hill, NC
Last year, I was invited to participate in some patient advocacy work with the American Board of Pediatrics.  The American Board of Pediatrics has recently taken steps towards incorporating more patient and family voices in its work.  As a part of that process, I was among a group of parents of pediatric patients invited to provide feedback to the American Board of Pediatrics and to gain greater understanding of the pediatric board certification process.

Growing up as a daughter of a board certified family physician, I've always felt that board certification was important.  I've also always known that board certification takes a lot of effort. I grew up having seen my dad, at times throughout his career, take time away from our family to further educate himself and pass his board certification exams.

But, beyond that, I had never given board certification any other thought, not as my role as a parent and not as my role as a parent of a child with chronic medical needs...that is, until I was invited to participate in some of the work going on at the American Board of Pediatrics.

It was during my work at the American Board of Pediatrics that I learned more about the board certification process and about what doctors (most specifically pediatricians) go through as an effort to give their patients the best care possible.

Patients and Families Meeting Attendees and some ABP staff at the American Board of Pediatrics

I remember when Brian and I first chose a pediatrician.  I was pregnant with our firstborn Oliver.  I had just moved to town so I used the recommendation of my dear friend Chelsea.  It turns out he was a great pediatrician.  However, I never once thought to find out if my doctor was board certified.

Years later when choosing specialists for Bennett's CF care, I never once questioned whether his doctors were board certified.  Why would I?  I just assumed they were...they have to be, right?!

To my surprise, what I learned at the American Board of Pediatrics Patients and Families Meeting is that, although all doctors have to be licensed by law, not all doctors have to be board certified.

When doctors graduate from medical school and residency, they must apply for a state license.  Once they are licensed, they are considered to be able to practice medicine for as long as they do not get their license revoked.

Board certified doctors, however, are those who already have a license but have gone further.  They are those doctors who, on top of being licensed with the state, have demonstrated competencies in several areas by way of studying and taking exams as presented to them by their board certifying body.

There are many board certifying bodies out there:  The American Board of Pediatrics certifies doctors in pediatrics and pediatric subspecialties.  The American Board of Internal Medicine certifies doctors in Internal Medicine (the care of adults) and related subspecialties.  Subspecialists such as pulmonologists (CF docs, for example) have received additional training in pulmonary medicine (either pediatric or adult) and are certified by either the American Board of Pediatrics or the American Board of Internal Medicine, depending on training.

As soon as I learned of the distinction between licensed doctors and board certified doctors, I went right to the American Board of Pediatrics' website to check to see if my children's doctors are Board Certified.  Thankfully, they all are.

I feel a bit of relief knowing that the doctors who care for Oliver, Bennett and Avonlea are board certified because board certification demonstrates that my children's doctors have spent extra time and resources to stay current in medicine and desire to provide the best quality patient care.  

The definition of a "good" doctor (other than that they do no harm) tends to be preferentially individual.  But what I appreciate most about the difference between a licensed doctor and a board certified doctor is that a certified doctor is held to higher standards in accountability and is required to regularly demonstrate he/she has furthered their medical education.  Most certainly, a licensed doctor may continue learning but there is no accountability to make sure they are.

While physicians who regularly take tests on new medical information can benefit patients, I don't believe it's just board certification knowledge that is important.  I think the benefit is beyond that. The value is in the process.

Learning doesn't happen by demonstrating that you know a fact once.  It happens when you repeatedly submit to a discipline over and over again and you are shaped in such a way that you naturally respond, without thinking, to certain events.

When my children's doctors become board certified, they indicate to me that they have chosen to seek continued education...chosen to participate in a community of doctors before him, with him and beyond him that are making the commitment to do the same thing...and are being formed by that process.

Board certification can be costly.  Many hospital systems don't pay for their doctors to take their boards so doctors themselves must pay for it out of pocket.  And board certification is not easy.  Board certification requires doctors take time away from their work and their family to study for their boards. The cost and time burden of board certification can be challenging considering many doctors are already overwhelmed by preauthorizations and electronic health record paperwork. Knowing this only makes me more grateful to the board certified doctors in our life who make so they can provide high quality care to my family.

Considering that board certification is a hot healthcare topic among doctors right now, I'm of the opinion that patients and families should know more about the topic of board certification so they too can join the discussion, for it's their health that is on the line.

In an effort to educate other parents about board certification, I recently shared my personal views on a video for, a website created for parents by the American Board of Pediatrics.  To watch the video, click here.

My having learned the value of board certification makes me even more appreciate all the extra time and money given on our behalf to improve patient care.

If you're a board certified doc, thank you!

Our reset button

Sunday, June 25, 2017

We had been saving for this family trip for two years.  But, as the date approached, we were unsure we'd be able to travel due to Bennett's health.  Nonetheless, we held out hope that Bennett would recover in time.  Thankfully, Bennett's last surgery went remarkably well. So, last month, we unplugged from life and entered fantasyland, literally.

In late May, several weeks after Bennett's surgery and a few weeks before school let out, Brian and I secretly packed up the kids' things while they slept and woke them up the next morning telling them they were going to school (just like they would any other Monday).  Instead, we flew them and ourselves to Disney World.

The boys learned the secret on the way to the aiport.  They were overjoyed but a bit shocked to hear we were ditching real life to go to a place so magical.   Having never surprised them in such a fun way, they asked us repeatedly "why would you do this!?" We would just smile and say, "because we love you."  Avonlea, being 3 years old, didn't really know yet what she was in for.  But, she certainly learned of the fun of Disney World once we got there.

We spent 3 days at Disney.  The first day at Magic Kingdom was mainly for little sister.  We met all the princesses we could and rode every ride Avonlea could ride.

Although the boys were less enthusiastic about meeting princesses, they genuinely enjoyed Magic Kingdom. The boys were particularly mindful that their excitement would become her excitement so they tried hard to play along in the fun.

Avonlea's favorite princesses tend to be Rapunzel, Elsa and Belle.  But it honestly depends on the day.

Avonlea really loved Olaf.  She was fascinated by the fact that Olaf couldn't sign her autograph book because he has stick fingers.

Having had enough of CF interruption for a while, we did our very best to leave CF at home.  But, unfortunately, breathing treatments and meds still had to be given multiple times a day. 

We spent one day at the Polynesian Resort to play at the pool and just relax between park days.  Disney World is hard work and we wanted to make sure we really slowed down to enjoy it.  

We wanted to conserve Bennett's energy since he's already underweight and we wanted to keep him from overheating (electrolyte balance can be an issue with CF) so we rented a stroller for Bennett and Avonlea to use while we were there.  

On our third (and last) full day at Disney, we visited Hollywood Studios.  This day was particularly for the boys since they love Star Wars.  We tried to meet every Star Wars character we could find.  

This picture captures was one of Bennett's highlights of his visit to Disney World.  Bennett came in to this "meet and greet" speaking to Guardians of the Galaxy's Groot (see the little brown guy far right) in Groot's language.  Star Lord (the guy standing behind Oliver in this picture) made a big deal about how Bennett could actually understand and speak Groot, which is quite impressive, he said, because nobody else understands what Groot is saying most of the time.  Bennett was grinning from ear to ear, so proud of himself, for being acknowledged for actually speaking Groot. ;) 

Bennett and Oliver both had a chance to sharpen their light saber skills at Jedi Training.  Bennett who loves particularly loves pretend play totally got into character.

While some of the kids in the Jedi Training group fought Darth Vader (far left), Bennett (pictured here) and Oliver had a chance to fight the Seventh Sister from Star Wars Rebels.

Oliver used the force during his training.

I thought the character that they fought was kinda freaky.  She looked scary.  But the boys weren't a bit scared and really loved getting to fight her.  It's no surprise that the Seventh Sister lost in the end. These were a fierce bunch of Jedi trainees.

We didn't realize it until we returned home just how much this vacation provided our family a reset button with regard to the previous stress we had been under.  Bennett's health has dramatically improved since his last surgery.  A week of being able to forget all of what we had just been through and to just enjoy our time together as a family was very healing for our hearts.  We were able to bring that peace back home with us.  This trip serves as a reminder to me of how critical vacations really are, particularly when facing stressful experiences.

Personally, one of my most favorite magical moments of the week while at Disney World was having a late dinner at Cinderella's Castle.  Oliver was disappointed that we were going to miss the fireworks happening outside the castle that night.  But, we explained, this was the only available Cinderella's Castle reservation we could get.  Then, partly through our meal, we heard music begin to play and the sound of popping outside.  Startled, we looked out the window and began to watch as fireworks were being shot off right next to us.  To our great surprise, it turns out that we may have had one of the best seats for fireworks that night in all of Magic Kingdom.

Bennett's Brigade 2017

Wednesday, June 21, 2017

I wanted to publicly acknowledge all of those who donated to the Cystic Fibrosis Foundation this year to help us find a cure for Bennett and to thank those who walked at Great Strides Walks in Waco, Dallas, Columbia, Mo, and Raleigh, NC last month.  This was our 7th year to Walk.  Together, we raised $4700 in honor of Bennett!

Thank you to Bennett's best friend Philip's family who donated and took care of ordering Bennett's Brigade tshirts this year as we were a bit underwater due to Bennett's recent surgeries.  This was a huge gift to us!

This is our Raleigh, NC crew!  Love them!

This is our St. Louis crew!  Thank you to my sweet sorority sister Kelly for leading this Walk even as she was in her third trimester! Love to you Amy and Natalie (and company) for coming out to support Bennett!

This is our Dallas crew!  Thank you Lani (center) for leading up our Dallas Walk.  You continue to amaze me how you care deeply and give selflessly!  (And thank you Roy for taking awesome group selfies!)

It is with deepest appreciation I share these pictures of people who physically came out to show Bennett he is loved.  But I want to also recognize the many other people who gave financially this year or who supported us through Bennett's recent hospitalizations through meals, gifts for the children, gift cards, etc.  Bennett's Brigade is full of people who show their love in a variety of ways. If you are one of those people who gave in a meaningful way, thank you.

Look at these sweet girls who want very much to find a cure for cystic fibrosis!!

It's pretty special when two people I love from two different states meet up at a CF Walk.  Thank you, Cynthia, for leading the Raleigh Walk this year and thank you, Lynn, for all that you do for the CF Foundation on a daily basis.  It really touched me that you walked for Bennett this year.

Anna and Betty, two sisters, daughters of one of my dear friend from college and who live in Kansas City, put together a snack stand to raise month for Bennett this year.  Thank you girls!!

One of my biggest fears every year during this time is that I won't remember to thank someone or I won't have the ability to acknowledge to them how much they mean to me.  Please know how much my heart bleeds with gratitude for the ways people love our son and our family.

Kevin, our favorite DJ, who moved a while back made sure to come out to Bennett's Walk this year.  

Muchas gracias to all who are a part of Bennett's Brigade far and near!!  We are immensely blessed to have you in our lives!! 

The calm after the storm

Friday, May 26, 2017

Finally, our family's "chaos knob" has been turned waaaaay down. Quiet. Calm. Predictable. That's the way I would describe our family's life right now.

Most children like predictability.  My kids seem to love it more than most.  They prefer doing the same thing over and over again.  Not changing the schedule.  Fewest interruptions as possible.

It drives me insane.  But there's no doubt that my kids prefer the chaos knob on low because CF typically keeps the chaos knob turned up high.

Thank goodness that after months and months of wrestling with the knob, we were finally able to gain control again and turn the volume down.

Bennett is doing remarkably well right now.  He has had no issues with his bowels since his colostomy reversal.  He reports his tummy feels good and he is having no pain.  Frequent use of the bathroom is no longer a problem.  And he's gaining weight.  Personally, I think he's looking healthier than I've seen him in a really long time!

One of the ways our family gained control of the chaos knob was getting Bennett the right care with the right team at the right time.

One of the other ways we have worked to gain volume control over our lives is that Brian and I have decided to make significant life changes in benefit of the health of our family.

Since Brian's job requires him to be away from our family and Bennett's health demands constant vigilance, I have chosen to scale back significantly on things that don't directly involve caring for the kids.  This has been a personal challenge for me as I tend to be pretty ambitious. It's hard when my heart wants to do so much but my circumstances dictate the time is not now.

This year, Brian and I found our relationship stressed to a place we never have before.  The children's needs, both health-wise and educationally, have required of us more than we were prepared for.  But, the process of finding balance has taught us the value of perseverance and commitment and have asked us to tease out those things that are life-giving from those things that take more than they can give.

We recently went on a vacation as a little family.  I'll share those pictures in an upcoming blog.  But I can share that taking a break from life was a tremendous blessing to us all.

We've decided to withdraw the boys from school for next year and homeschool them (Avonlea will continue preschool at her school as planned).  This is a bit of an extension that was already happening with Bennett this year.  But, it feels a bit more rogue than I like.  I love my boys.  I love teaching my boys.  I also love sending my boys to school. :)  But, in our process of wanting more peace for our family, we realized we need to get a better handle on their dyslexia needs.

The idea of homeschooling my children feels a bit like moving to a farm.  There is something so joyful about wide open green space.  No more hustling and bustling, meeting other's demands, worrying you're not measuring up.  Instead, there's an embracing of the quiet, slow experience of just being you and meeting the needs of your own.

But going off the grid, as exciting as it is, still feels a bit terrifying.  Will the quiet become too quiet? At the end of the day, will I miss the big city noises?

Thankfully, God has been really present in this decision for our family. Waco has a lot of homeschool co-ops made up of people who homeschool for a variety of reasons.  I have a Masters in Elementary Education so I feel confident to teach them.  Neighborhood children who we didn't know existed several months ago have turned up next door and down the street.

The best part is we will have so much more time to care for Bennett and do the things we want to get done.  Instead of having to keep up, we'll get to slow down.

Even though they acknowledge they will very much miss their friends, both boys are very excited about this decision, which was half theirs to make.  Bennett described it to his friend who was sad he wouldn't be back next year: "but now, we'll get to have double the playdates!"

More changes may be in store for our family as we continue our campaign to bring peace and balance to our home.  But, right now, the chaos volume is low once more.  The calm after the storm.

The winds are gone.  Rain has stopped pouring.  Things are still wet but rebuilding has already begun.  We still feel a bit shaken up but we've never been so thankful for peace.  God is near.  There's a rainbow in the distance.

Bennett returns to school and how he's doing

Saturday, April 29, 2017

Bennett was SO nervous that first day back to school a week to the day he had surgery to remove his colostomy.

As he rounded the corner to enter the classroom, he pushed his hair to the side with his palm and whispered to me, "do I look good?"

My mama heart could hardly handle his first grade innocence.  "You look great," I whispered to him as he entered the classroom to classmates who nearly jumped out of their seats in excitement to welcome him back to school.

I felt choked up. Bennett wasn't focused on the tragedy of what he had missed at school, this, his first grade year, due to complications of his inherited disease.  Bennett was focused on more typical things, like whether or not his elementary friends would approve of how he looked.  How grateful I was for "normal" in that moment.

Bennett's first day of school after being out for 10 weeks due to medical issues.
Bennett has now been in school for more than a week and his teachers report he is doing well  His classroom time is no longer being interrupted by having to go to the bathroom.  And his ability to learn seems to have increased.

I tutor Bennett at home for his dyslexia and I noticed this week that his reading fluency has surpassed anything he had ever demonstrated in our work before.  Just last night, Bennett walked up to me and said, "Mom, I know my days of the week."  This may not seem like a big deal for a first grader.  But for Bennett it is.

Memorizing sequences of information that aren't particularly relevant can be challenging when you have dyslexia.  For that reason, the days of the week have been something Bennett has seemed unable to memorize, despite my many efforts to teach them to him using songs and games.

Last night, without any prompting, Bennett just spit out the days of the week in order (!!).  Bennett's face demonstrated he was almost as confused over his success as I was.  I could hardly believe it.  I pelted him with questions: how'd you do that? when did you learn to do that? did you work on that today at school? did somebody just teach them to you??  He answered negative to all my questions and kept shrugging his shoulders, "I don't know.  I just know them now."  It's like they had been in there, all jumbled up, this whole time and finally they just lined up for him.

Children grow physically and intellectually asynchronously.  But, even in my role as an educator, I have never seen asynchronous intellectual growth like I have witnessed with Bennett this last week.

Brian said it best: "resilience comes with a cost."  While Bennett has been very resilient this last year, much of his energy has had to go to healing his body.  Now that he's GI issues have been repaired and his body has been healed, it certainly seems body's energy has moved towards growing his intellect.  I fully believe that what he's missed out on academically these last few years will be gain in the coming year (barring any new crisis).

Along these same lines, I am hopeful that his body can now start rapidly gaining weight.  We know that CF has already begun the process of deteriorating his lungs.  We want to give him the greatest chance of success by giving him the strongest lungs possible.  A CF child's job is to grow strong lungs.  Weight gain is necessary for that.

Bennett is being given up to 3 formula cans through feeding tube a day, 45ml of Liquigen fat and encouraged to eat a high-fat, high-calorie diet.

It takes a lot of resources to keep him on this regimen daily, in addition to giving him breathing treatments every morning and every night.  But seeing him thrive for the first time in a long time is a huge motivator to keep up this hard work.  I am so proud of how Bennett is doing.

We are looking forward to celebrating Bennett's fight against CF with his CF Walk in Waco next Saturday, May 6th at 9:30-11am at Poage Park.  For those who want to come out and celebrate with us, please wear green and join us!!

There will be another CF Walk in St. Louis on the same day (Thank you Kelly for heading it up!). And there will be two other Walks in Dallas on May 13 (Thank you Lani!) and Raleigh on May 20 (Thank you Cynthia!).  How lucky we are to have people beyond Waco who care so much for our boy!

Thank you to Anna and Betty, our dear friends from Kansas City, for raising money to support Bennett in his fight against cystic fibrosis.

For those who aren't able to come out but want to support helping us find Bennett a cure, consider donating to the Cystic Fibrosis Foundation in Bennett's honor:

Thank you to all those who continue to walk through this journey with us - we celebrate the gift that you are to our family!

Colostomy Reversal Day 2

Saturday, April 15, 2017

::Edit: Bennett was discharged on Day 3 (Saturday, April 15th).  We were thrilled to able to enjoy Easter as a family.::

Yesterday was full of a lot of things...but all of them good!!

1.) Bennett lost a tooth yesterday (anybody know if the tooth fairy visits the hospital)?!

2.) Bennett learned to play the Ukele during a Music Therapy session.  (I had no idea until admission that Children's even offered music therapy but we all loved it!)

3.) Some bunny (a secret little bunny) dropped off personalized little Easter baskets for each of the children yesterday.  They were thrilled!!  (If that was you, thank you from the bottom of my heart!!)

3.) Bennett and Oliver had some sweet friends from Waco who came to visit!  Thank you for lunch and yummy goodies, Bauer family!

4.) Bennett was able to wear something more comfortable than his hospital gown all day because of "Luke's Fastbreaks"!  After our last hospitalization, I started searching the internet to see if I could buy more comfortable hospital gowns. The hospital ones get so old and are itchy. What I came across was "Luke's Fastbreaks" which is an soft cotton alternative to a hospital gown. Hospital gowns are usually necessary because of all of the tubes and cords that have to be worn during the hospitalization.

A young boy named Luke, who was diagnosed with cancer several years ago, came up with the brilliant idea of turning a long tshirt in to a hospital gown by adding rip-buttons along the side of a tshirt so it can handle the cords/tubing.  After designing such an awesome tshirt, he decided to make more so other kids like him could benefit.  I contacted Luke's Fastbreaks to see if I might be able to get one for Bennett.  They cheerfully sent us a few of them, along with some other really fun goodies. Outside of the shirt, we really loved the water bottle they sent as it was designed to allow drinking from it in the hospital bed!  Yay for really great innovation!!  Thank you Luke!!!

In addition, Luke's Fastbreaks asked us if there was a favorite Child Life Specialist they could honor in Bennett's name.  We picked Katie (Katie is who told Bennett about his ostomy during our last hospitalization, a huge support to me and Bennett during that time).  Luke's Fastbreaks will send Katie a little something to thank her for all she does for kids!

5.) Bennett felt good almost all day. We are hoping for discharge today!  He ate well, was in great spirits and was able to increase his lung therapy throughout the day.  His lungs continue to sound clear.  Bennett's IV blew in the afternoon so they pulled it out and started giving pain med orally.