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Archive for June 2015

Baby Bow Tie + Kendra Scott Fundraiser in Dallas

Monday, June 29, 2015


Last month, for the second year in a rowBaby Bow Tie's Kat Armstrong (left), a champion for Bennett and all those with CF, organized at Baby Bow Tie + Kendra Scott Gives Back Fundraiser to raise money to help us find a cure for CF.

Additionally, this year,
Michelle Staubach Grimes (right), author of the children's book, "Where Is Pidge?" held a book signing during the fundraiser.   Thanks so Taylor Alexandra (not pictured) who donated her time to capture beautiful photos of the event. 


This photo captures the first moment as we walked in.  Bennett went right to Kat to say hello.  These two have a special connection.  Bennett knows she is someone who wants very much to find him a cure and had thrown this big party just for him!  Kat knows this is a little boy who needs a miracle. (Photo credit: http://www.tayloralexandraphoto.com/)


A Baby Bow Tie headband for little girls.  (Photo credit: http://www.tayloralexandraphoto.com/)


This year's fundraising event was held at the Kendra Scott store in West Village in Dallas, Texas. (Photo credit: http://www.tayloralexandraphoto.com/)


This fundraiser lasted from 5-8pm.  Twenty percent of all store sales during that time went to the CF Foundation(Photo credit: http://www.tayloralexandraphoto.com/)


Although many of the shoppers that night were friends and acquaintances of ours, many others were just random shoppers that had stopped by to pick up a thing or two.  I loved how they were helping us get a cure for Bennett, even if they didn't know it. (Photo credit: http://www.tayloralexandraphoto.com/)


Here are the Kendra Scott girls that helped make this year's fundraiser successful! (Photo credit: http://www.tayloralexandraphoto.com/)


What perfect patriotic pieces - this sweet little bow tie (I love how Baby Bow Ties have magnets so it's easy to put them and keep them on) - and cobalt blue Kendra Scott studs(Photo credit: http://www.tayloralexandraphoto.com/)


I love the simplicity of Kendra Scott jewelry.  It looks great casual or dressy. (Photo credit: http://www.tayloralexandraphoto.com/)


Bennett tells Mrs. Kat about something interesting. I'm not sure what but they both look in to it. :) Kat has an adorable toddler named Caleb so she has a tender heart towards little boys.  Caleb is why Kat created Baby Bow Tie.  (Photo credit: http://www.tayloralexandraphoto.com/)





The event ended up raising more than $1200 for the CF Foundation in honor of Bennett!!

Despite the fundraiser being more than 2.5 hours away from our home, we had quite a few friends who came out to help support Bennett.  One of those was the mama of one of Bennett's best friends, Parker.  We enjoyed getting to see Dana, who recently moved to Dallas, and her friend at the event.


It was a special treat to have a chance to meet Michelle Staubach Grimes, daughter of football legend Roger Staubach and author of the children's book "Where Is Pidge?"  Michelle's best friend passed away from Cystic Fibrosis so she is a big supporter of the Cystic Fibrosis Foundation.


This was the first time Oliver had ever been to a book signing.  So, he really loved getting to have a book signed to him and learning how Michelle wrote the book.


Avonlea, wearing one of Baby Bow Tie's newest girl hair bows, loved sitting down with the "Where is Pidge?" book.  She has always loved reading and looking at books so it's no surprise that when she saw there were books there, she had to immediately sit down and read one. (Photo credit: http://www.tayloralexandraphoto.com/)


This is Meredith, manager of the West Village Kendra Scott store, and someone who I adore.  She was at our fundraiser last year and this year and asked to take this picture with us.  But the truth is the honor is ours.  She has been so helpful for us raising money for the CF Foundation and wants to see our little guy get his cure!


Brian and I really enjoyed getting to see Brian's high school friends from Missouri who now live in Dallas.  Thanks for coming, BJ and Kat!


The Baby Bow Tie + Kendra Scott even was held on Red Nose Day so our dear friend Megan was so thoughtful of the boys to make sure to bring them a surprise treat.  All three of our children have had a "ball" with these big red noses. 


Bennett wanted to give a message to Mrs. Kat: "Thank you for helping me get a cure for my Cystic Fibrosis.  I love you."  Brian and I echo his message and have one of our own to all who came out that night to raise money for the Cystic Fibrosis Foundation: "Your coming out and supporting Bennett's fight against CF made our hearts swell with gratitude.  Thank you!!"  (Photo credit: http://www.tayloralexandraphoto.com/)

Another Surgery Scheduled. This is number 6 for Bennett.

Friday, June 26, 2015



For the last few months, Bennett has been complaining of headaches.

His complaints were never very consistent.  Sometimes it was the left side of his head.  Other times, it was his right side.  Sometimes it hurt when he was running.  Sometimes it hurt when he was sleeping.  I figured it was just 5 year old stuff - making things up when it is convenient.

But, after 2 months straight of complaining every few days, I decided to have him checked out.

The first thing I considered was having him looked at by his ENT.  Sinus issues are frequent among those with CF.  I was delighted when the ENT told me what I had expected.  His nasal cavity looked clear of nasal polyps (a common issue in CF due to inflammation from mucus build-up in the nose).  I was delighted to know we were in the clear.

But then, the ENT suggested that we do a CT scan on him to make sure there was nothing hidden inside causing him issues.


Bennett hasn't been sick for a long time.  He made it through the cold season with almost no issues at all.  He has yet to culture any serious lung infection and has never developed a cough.  So, when our ENT suggested this, I couldn't imagine why a CT scan would really be that necessary.

Nonetheless, we went ahead and had one done.

Turns out: Bennett's sinuses are completely blocked. No wonder our little guy is having headaches. The only way to resolve it is sinus surgery.

Bennett's CT Scan - June 2015
I was shocked when I saw the CT scan.  See those two cavaties under Bennett's eyes?  They are supposed to be black (black indicates air).  Instead, they are almost completely filled.

Image found here: http://www.cancer.gov/types/head-and-neck/patient/paranasal-sinus-treatment-pdq
Bennett's maxillary sinus, sphenoid and ethmoid sinuses are almost completely blocked by mucus. (Thankfully, his frontal sinuses are not blocked because they don't typically develop until the teenage years - one less sinus blockage to worry about).

Unfortunately, sinus surgery is par for the course with Cystic Fibrosis.  We knew it was only a matter of time before Bennett would join his fellow CF patients and need sinus surgery.  But, it's pretty wild to think his sinuses have completely blocked with dry thick mucus, all while he has been otherwise asymptomatic.

These are those moments when I feel shocked that CF is seriously causing havoc inside Bennett's body.  He looks so healthy.  He acts so healthy.  How could he possibly be sick?

Although I have resolve now, I did have a good cry shortly after learning he needed surgery again.  Sometimes it's easy to just see things like this as "just part of our life - another surgery, another day".  But, at other times, I stand back and ask, "what in the world!? are we seriously dealing with a nasty progressive disease we cannot stop?"  It's a crazy feeling to be in this place, putting my fairly healthy child back in to surgery again.

Surgery has been planned for July 9th.  It is planned that Bennett will be admitted for a one night stay at Scott and White in Temple (where he had his last surgery).

We have several weeks to prepare and have begun speaking to Bennett about it.  His last surgery went so well that we are all very confident this one will go off without a hitch.

But it is still disappointing that our little man will have to endure his 6th surgery before his 6th birthday.

...and just to think, the lung issues haven't even begun yet. :::sigh:::

Bennetts School Raises More than $1000 for a Cure for Cystic Fibrosis

Thursday, June 25, 2015

Our family is extremely appreciative to the St. Paul's Episcopal School - Waco community who helped raised $1257.50 for the Cystic Fibrosis Foundation in honor of Bennett.  What an amazing group of generous people we have at the kids' school!
These are just some of the children who went above and beyond to help raise money for a cure for Bennett.  Truly, our hearts are overflowing with gratefulness to these sweet specific kids, as well as all those they represent at St. Paul's (staff, students and parents) who helped them make this happen.


Each year, I'm invited by the St. Paul's administration to come and speak about Bennett's condition.  This is a great way to teach children about helping others.  In addition, it helps children learn about Cystic Fibrosis and how sometimes people are sick, even when they don't look like it.  For the first time, I brought Bennett's percussion vest with me when I came. This picture captures the moment when I turned on the machine and Bennett started singing "Twinkle Twinkle Little Star."  The children, up until that moment had been curious and quite but when they heard Bennett's singing voice vibrating, they erupted in laughter.  Bennett loved getting to share his treatments with his school.  And the children and staff appreciated better understanding what it's like for someone with CF to take care of their lungs.

This sweet picture is of Meg, Eric and their mama Mandy who held a school-wide bakesale to raise money for Cystic Fibrosis.  It was Eric, who several years ago approached his mother to ask how he could help raise money for a cure for Bennett.  He and his sister have lead a bake sale fundraiser ever year ever since.  What a treasure this family is to ours!  



We are also thankful to BJ Restaurant in Waco who donated more than 100 warm cookies to St. Paul's to help the children celebrate all the money that was raised for a cure for Cystic Fibrosis.  The boys were at school when I dropped by the restaurant to pick up the cookies but the assistant manager and I decided to capture this moment next to pictures of other children with Cystic Fibrosis hoping for a cure.  BJ Restaurants' corporate chosen charity is the Cystic Fibrosis Foundation. BJ's donates a portion of profit of every one of their Pizookie desserts to helping find a cure for CF.  We are very appreciative that our local BJ's would want to support helping extend the life of one of their little customers.

Warm cookies from BJ's Restaurant await the children at lunch time - a sweet treat to thank such caring and thoughtful children and staff at a school who wants to see Bennett be able to live long and use his St. Paul's education to make the world a better place.

Thank you St. Paul's, BJ's Restaurants and all those who are helping us put an end to Cystic Fibrosis.

Last Day of School 2015

Monday, June 22, 2015

May is always a whirlwind for our family.  It's "Great Strides for Cystic Fibrosis" month as well as the end of school and beginning of summer.  It's hard to keep up as it is, much less when it comes to blogging about it.  I'm behind on my blogging but in an order to catch up, I thought I'd start with some First/Last Day of School comparison pictures.  It's so crazy to see how much change can happen in 9 months time...
This year Bennett finished Pre-K.  Oliver finished 1st Grade.  
And Avonlea completed the toddler class.


Oliver, 7 years old

Bennett, 5 years old

Avonlea, 1 year old


Oliver lost his baby teeth but he began gaining his adult teeth.

Bennett is noticeably taller these days.

This year, Avonlea's hair has grown, her vocabulary has burgeoned and her newfound independence is evident.

If you like to looking back at pictures of babies growing up, be sure to check out our Last Day of School 2013 and First/Last Day of School 2014.