Baker Boys' Battalion

14/02/2024

🍀 FEELING LUCKY?! Join us for Shamrockin' for a Cure on Saturday, March 23 at Union Hill Park in Alpharetta! Enjoy tastings from over 25 restaurants, a top shelf open bar, dance to live music by pop artist Justin Borgman, shop our auction, and more. Join us for Atlanta's favorite St. Patrick's Day tradition - you won't regret it!”

Grab your discounted tickets right here:

https://events.cff.org/shamrockinforacure/pam

03/02/2024

As we approach the 15th anniversary of ShamRockin' for a Cure, I am constantly reminded of the profound impact that Jon had on our journey. Two years without his guiding voice, yet Jon's spirit resonates in every heartbeat of our cause, every committee meeting and every decision we make.

Jon's legacy inspires us to celebrate not just 15 years of Sham, but 15 years of hope, progress, and unwavering dedication. With gratitude for the incredible community that has rallied behind us, we aim to raise $65,000 in honor of Jon's memory. No matter what iteration of the Baker Boys' Battalion you’ve supported, we hope you’ll come alongside us again this year by attending or sponsoring Shamrockin' For a Cure or by making a direct donation if you aren't able to attend.

Let’s make this 15th year a momentous occasion, echoing with the promise of a brighter, CF-free future—a future that Jon envisioned for not only Gavin and Jake, but for all those living with cf.

Thank you for being an enduring part of our journey, and for helping us fulfill Jon's promise to never stop until a cure is found.

Donate here:

To Our Battalion of Supporters:   In 2002, our only son, Gavin, was diagnosed with cystic fibrosis. Soon after that, our second unborn son, Jake, was also diagnosed with CF through amniocentesis. Our hopes of first football games, girlfriends, graduations and grandchildren turned to a future ful...

09/11/2018

So I clearly forgot to post about our August cf clinic...I’m chalking it up to getting caught up in Gavin going off to college craziness!! Anyway- Gavin has FINALLY gone to his first clinic visit at MUSC in Charleston but I have no idea how that went aside from his very thorough report of “it was good”. 🙄

Jake had his quarterly visit yesterday which included his annual glucose tolerance testing (he passed - yay!!) and taking part in a clinical trial which is testing for changes in sweat chloride for patients taking Cf modulators (Orkambi, Symdeko), which is really kind of cool.

We also got to say goodbye to Barb, our very first member of our cf care team, before she retires next week. We’ll miss her terribly but no one deserves retirement more than she does!

So here’s the breakdown:

Weight: Great news!

Jake gained NINE pounds weighing in at 134 lbs! I thinking his weight training class is paying off! He weighed 124 in August so this officially puts him in the green zone on BMI - jumping from the 34th %ile to the 53rd!

No height gain - he’s holding steady at just shy of 5’ 7”....he’s still holding out hope for a growth spurt somewhere! 🤞🏻

Lung function: Not so great news 😥

PFT’s in August were awesome - 107 but they dropped quite a bit down to 99.

Liter Volume dropped from 4.23 (all time high) to 3.96.

Why? Not exactly sure. He has a slight cough but the doctor thinks his asthma (yup...double whammy of cf and asthma!) might be flaring up. Jake will start a new combo inhaler of albuterol and Flovent to see if that helps. We’ll try that for a week or so and then go from there. 🤷🏻‍♀️

That’s it for 2018 cf clinics! 🤞🏻🤞🏻 for a bump back up in lung function but aside from that - the Baker Boys are slaying cf!

11/05/2018

Wow!! Yesterday was too much for me! CF quarterly clinic day started off exactly the same as every other clinic visit for the past 16 years - me frustrated with Gavin and Jake for making us late as we run out the door to beat Atlanta traffic and the boys saying "Relax, Mom...you're not ready either!" (busted!) but as we drove down 400 and the boys swapped theories on the upcoming release of Deadpool it dawned on me that this would be the very last trip to clinic that we would ever make together. What?!?! Gavin is headed off to college in the fall and we (the care team and Gavin) decided that he would transition to the adult cf care center in Charleston instead of making the trip back to ATL for each visit. Ok, so this stung a little bit as reality seeped in. Then we get to clinic and each member of the team, one by one, wished Gavin well and said their goodbyes.....pictures were taken, cards were exchanged....my heart started aching as I struggled to hold back the tears. THEN the social worker pops in and says "Oh...I forgot to tell you that Jake starts his solo visits next time so you'll have to wait for him in the lobby in August." Of course, I knew this was coming but in the moment I was screaming (on the inside!) "ARE YOU KIDDING ME RIGHT NOW!?!?!" AND THEN I found myself in North Gwinnett at round 3 of lacrosse playoffs. As the clock ran down and it became clear that, despite an amazing effort, we were going to lose, yet another reality struck - after 9 years of lacrosse, this would be Gavin's last game I would ever watch. COME ON!!! There's only so much a mama can take in one day! Game over!! Tears fell....A LOT of tears fell....in fact, they are falling again as I write this. The struggle is real, people. Life marches on and it's hard to watch as our little birds start to spread their wings and leave you behind.

Anyway...clinic itself was pretty good overall. Jake has had some lung struggles since the last visit so his results were especially awesome! Here's the lowdown:

Jake:

Height: 66.8 inches (66.5 in Feb)
Weight: 133 lbs (131.4 Feb)
BMI: 58%ile (57%ile Feb)
PFTs (lung function): 108!!!! (93 Feb)
Liter Volume: 133.11 (131.4 Feb)

YAY!!! Although he's desperate for a legit growth spurt

Gavin:

Height: 70.8 inches (70.6 Feb)
Weight: 151 lbs (162 Feb - OUCH!!)
BMI: 35%ile (58%ile - DOUBLE OUCH!!)
PFTs: 91 (90 Feb)
LV: 4.33 (4.24 Feb)

Soooo......as you can see....adding lax season to the mix without adding lots of extra calories to the diet is a surefire way to slip down the charts! Not good! Gavin has some major work to do in the weight department before he goes off to school - the nutritionist ordered him to gain AT LEAST the minimum freshman 15 once he hits CofC!! ;)

All in all, though, a very good visit (aside from my emotional torture!).

Wish me luck as I try to make it though graduation and beyond!! 😥

07/03/2018

It’s here!!! We officially have the latest, greatest, bigger, badder, better cf drug in our house!!!! In the infamous words of Ice Cube...I gotta say it was a good day!

14/11/2017

It's cystic fibrosis clinic time again - the last one of 2017 and I'm excited to say that it was pretty awesome! Both Gavin and Jake killed it...even Jake's chest x rays are better now than they were two years ago (thank you Orkambi!!)!! Now we hold our breath for the culture results, but in the meantime, here are the deets:

Jake age 15:

AUG NOV

Weight 124.7 132.6 (what?!?!)
Height 5'6" 5'6 1/4" (desperate for more!)
BMI 50%ile 64.9%ile (!!!)
PFT's 102 103
Liter Volume 3.76 3.86

Gavin age 18:

Weight 151 160 (pumping iron pays off!)
Height 5'10 1/2" 5'10 3/4" (dying for 6ft!)
BMI 43%ile 57%ile (unreal!)
PFT's 89 88 (not a fan of the 80's tho!)
LV 4.14 4.12

Pretty amazing way to finish off the year! My boys....kicking some cf ass one day at a time!!

17/05/2017

Did you know that Gavin and Jake take about 50 pills/day to manage their health and fight cystic fibrosis? Sounds like a lot, right? Check this math out:

50 pills/day
350 pills/week
1500 pills/month
18,250 pills/year

Gavin is 17 and Jake turns 15 on Friday.....that means that Gavin has swallowed over 300,000 pills in his lifetime and Jake has swallowed over 270,000!!

I might be a little bit mean....but we make fun of kids when their parents can't get them to swallow an advil. No offense if this sounds familiar! ;)

Here's Gavin demonstrating his mad pill popping skills from a couple of years ago....and yes...he still thinks I'm a complete dork

15/05/2017

Ok so I'm not so good at posting daily cf stuff during this month of cf awareness, but here's an interesting glimpse into what it takes to live with cf. Here's a shot of Jake's vest system - the one that he hooks up to 2-3 times every single day for at least 30 minutes each time. The vest literally shakes him up at different vibrations/frequencies in an attempt to loosen the thick mucus build up in his lungs - the best strategy, when paired with several different breathing treatments, to keep his lungs clear and in good fighting shape. Check out the numbers.....especially the number 561.3. Jake has had this vest for about a year and a half and that is how many hours that he has spent hooked up to his vest. 561 hours.....that's 33,660 minutes....over 23 days...in the past year and a half that Jake has been fighting his disease instead of doing fun, regular boy stuff like fighting with his siblings! ;) Jake turns 15 this week.....do the math....that's nearly 6000 HOURS of his life....almost an entire year of his 15 has been spent hooked up to this machine! Can you imagine?!?!? Jake has no choice, though...if he wants to have a shot at living a full life he has to keep on fighting...every single day.

So fight with us! Your donation adds days, weeks, months....even years because money buys the science that will bring us new therapies and one day...even a cure! Join Jake in his daily battle.....be a part of the Baker Boys' Battalion!

http://fightcf.cff.org/goto/bakerboysbattalion2017

04/05/2017

Here's day 2 of my May cystic fibrosis awareness.....the boys were diagnosed in 2002 and since then we have had the most incredible people come into our lives. What's the awareness part? Well....these people are by far the silver lining of living in this crazy world! Here is a perfect example - Sean Groer and Mayur Maulde have created this super cool event - passion fundraising at its best! Check out this wicked cool video that perfectly sums up our even cooler weekend! Year 2 of the Smokies and we raised over $120,000!! Woohoo!!

Cystic Fibrosis affects roughly 30,000 people, and that's 30,000 too many. This year HRE had the honor to attend Smokies GT. A weekend of Porsche fueled acti...

03/05/2017

So May is cf awareness month and I've never been very good at posting something daily about cf but I'm giving it a bid....3 days late! I recently came across this photo of Gavin and me..he had just been diagnosed at age 2 1/2. I was 6 months pregnant in this picture and had just found out that baby Jake would be born with cf as well. This pic brings me back to those very painful months of transitioning my heart and my mind from what I thought my life would be to my new life in the cf world. Lots of sadness in those eyes....