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Avonlea's 4th Birthday

Sunday, August 6, 2017


On July 25th, the baby of our family, Avonlea, turned 4 years old.  To celebrate, we invited four little girls over for a "My Little Pony" themed birthday party.  Avonlea's favorite toys these days are her "My Little Ponies" so this was a very meaningful fun theme for all of us.  Of course, it was even more special since I loved "My Little Pony" when I was a little girl back in the 1980's.  


Along with cake, we had "Pinkie Pie's Pink Lemonade", "Fluttershy's butterfly gummies", "Twilight Sparkle's Sprinkle Cookies," "Scootaloo's Skittles" and "Pretzel's Chocolate Pretzels." (In case you're not an avid "My Little Pony" fan, these are the names of each of the characters.)


Avonlea was SO excited for her birthday this year.  She loved every part of the party-theme and party-planning process and getting to host her friends.



Because pretend play is always fun when you're four, I made each of the girls little felt pony ears and pony tails to wear.  Each child was a different pony.  Avonlea's favorite pony is "Pinkie Pie" (pink).  But we also had "Twilight Sparkle" (purple), "Rainbow Dash" (rainbow), "Rarity" (dark purple+light purple) and "Apple Jack" (yellow).


The first activity that the girls enjoyed at the party was stringing Pony Beads together to make friendship bracelets.  I was surprised by how long this activity kept the girls' attention.  They seemed to really loved this.


Aunt Brooklyn helped a few of them get started.


Showing off their creations.


After making friendship bracelets, we played a version of "Pin the Tail on the Donkey" but played "Stick the Cutie Mark on the Pinkie Pie."  "Cutie marks" are the little graphics that each of the "My Little Ponies" wear on their back legs.


It's hard to believe our tiny tot is now 4.  Avonlea is full of sugar and spice and everything nice.  She loves pink, twirling in dresses and playing with dolls.  She also loves dress up, princesses, singing and dancing.  She is very independent, inquisitive and articulate.  She calls her brothers "my boys."  Bennett is her everyday playmate.  Oliver is her always protector.  She loved blowing out her candle!



Avonlea received so many fun gifts for her birthday.  But one of the sweetest gifts I can't help but mention is one given to her on behalf of my mother's dear friend.  (Pictured: Avonlea in the lap of my mom and her grandmother, affectionately called "Mumsy," holding the gift).  


My mom's friend, Christina ("Critty") Fairback, recently heard that Avonlea was having a "My Little Pony" themed birthday.  So, being friends with the "My Little Pony" creator, Critty decided to purchase a card and ask her friend, Bonnie, to sign it in order to send to Avonlea.  

I just might have squealed a bit myself when I opened the card.  The card reads: 

"Avonlea, I made "My Little Pony" years ago, just for little girls such as yourself.  Happy Birthday and Remember...Friendship is Magic! -Bonnie Zacherele."

Bonnie Zacherele is the woman who created "My Little Pony."  She created My Little Pony (which was first called, "My Pretty Pony") as a part of her job as a toy creator/illustrator at Hasbro in the early 1980s.  (The story behind My Little Pony is fascinating.  Click HERE to listen to the story of "My Little Pony" from Bonnie herself. And click HERE to learn more about how "My Little Pony" evolved to what it is today.)  

This card is SUCH a treasure to Avonlea and, frankly, to our whole family (who, at this point, are all fans of the toys/show).  What a sweet lady Bonnie is for doing this for Avonlea and what a sweet friend Critty is to ask Bonnie to do this for her.  It's hard to believe that an idea that came from the imagination and heart from a woman's own love for horses could become such a sustainable and well-loved toy that brings such joy to little girls like Avonlea 30 years later.  Thank you, Bonnie and Critty, for such a very meaningful gift that we are sure to always keep!!!


Avonlea, we are thankful for the gift God gave us in you!  We've loved every one of your 4 trips around the sun!  Can't wait for many more!

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 https://www.mycertifiedpediatrician.org/, 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!!