Touch-and-Go & Gender Reveal

Sorry for the delay in posting, but we’ve been busy since getting better. Making up for lost time I guess you could say.

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Saturdays are for the Boys!

Feeling Better

Thank you all for your thoughts and prayers. They must be working!

It’s been nearly eight weeks since I last posted of my staph infection, Dad’s ruptured quad, and Mom’s morning sickness. Basically our house looked like a morgue – I mean, not really, but you know what I’m saying. It was a rough go there for us at the house.

Cross our fingers but we all seem to be doing much better. There was a brief scare for me though. Approximately 72 hours after coming off of antibiotics, I began to have frequent, soft stools – very similar to when I had c.diff so Mom and Dad began to worry. Mom and Dad emailed my pulmonary team (sans Dr. Shukla) and we waited to see what they thought. Naturally, we gathered additional stool samples for testing and waited for what seemed for ever for the results – NEGATIVE!

Lewes, DE – June 21, 2017

As always though, we try and have some fun when we can and we’re all well. We quietly made our way down to Lewes, DE for a weekend, where I got to play with all my cousins and Morgan (who is sort of a cousin by proxy). The only problem with the beach was that it was incredibly hot that weekend and I got a bit overheated…so much so that I was a little disoriented on Friday while there, but I rallied by eating some food an chugging some water. On Saturday we tried again, but I wasn’t having any part of it. We might of stayed down there for 15 minutes tops.

 

Ba-Ba-Mama & Jimmy’s

With Mom and Dad having to take off a few extra hours while I was sick, Mom and Dad had to make up the missed work so Bama and Jimmy stepped up in a big way though Mom thinks I’ve been spending too much time over there because I ask to go over there all the time now.

Bama and I do a lot of painting.

 

Jimmy and I do a lot of racing, but those videos will come next time. In the meantime I’ll leave you with this gem. This is how I ride when at home with Dad.

As a thank you, Mom and Dad took Bama and Pop out to dinner on a nice cool evening in Old Town Alexandria. Naturally I tagged along.

 

Sports Minute

We can all agree this wouldn’t be a good blog post without some discussion on sports or folks stepping up in the fight against CF!

Baseball – I have a little work to do

Baseball – Practice Rain-or-Shine

Loss of a Legend – Don Baylor

This time last week, we lost a great human and ambassador in the fight against cystic fibrosis who lost his own battle with multiple myeloma – Don Baylor.

There were some really great articles that came out as a result of his passing. Here is a link to one of the better stories I found online and here’s another on how he sort of fell into fundraising for the disease.

Bonnie Downing, a 16-year survivor of multiple myeloma, shared her own battle with Baylor after his diagnosis, finally meeting him in person a few years ago in spring training. Yet, while Downing was a spokesman for the disease, Baylor chose to silently fight the battle.

“He was so selfless,’’ Downing said, “that he didn’t want to be a spokesman about his own illness. He wanted to instead talk about his work with Cystic Fibrosis. He said, “I can’t leave these kids.’ He was more concerned about them than himself.

Step Up

Nationals have been stepping up on the field all season long given all the injuries (most recently with Harper going down), maybe one of them could step up off the field and help carry the torch that was first lit by Don Baylor. Just saying..any Nationals player out there want to step up for the cause!?!?!?! Maybe you could help me with my hitting as well.

Speaking of stepping up…if you feel like going for a charity bike ride (20, 40, or 65 miles), join Dad and several of his colleagues and their friends in Leesburg, VA on October 8, 2017. If you fee intimidated, don’t be. Dad’s still recovering from a ruptured quad and has an old mountain bike so chances are you’ll destroy him.

I’m Going to be a Big Brother

To a little girl…

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Saturdays are STILL for the Boys!

Heading back to Aunt Rachel’s beach house this weekend and to see my cousins who’ve been away the whole month of August, so hopefully won’t be too long before I have some more fun stories to share.

Touch-and-Go & Gender Reveal

Giving Thanks (post is about two months behind)

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Giving Thanks

It all starts with Team Jack. I’ll never be able to thank Team Jack enough. Team Jack is all the friends, family, and doctors that are there for me and my family as we fight CF. Thanks to my family who ensures I perform my therapies each and every day, stays up with my prescriptions, stocking my favorite foods – gummy snacks and apple cereal bars, washing my hands frequently. I cannot begin to list all the things you do for me, but thanks from the bottom of my heart. I’ll try to call attention to a few others…

I have to thank Mom and Dad’s friends who help to raise awareness and volunteer their time at various events throughout the US and who run meals to them at Children’s while I’m there. I like to thank the ones that have made and continue to make donations (no amount is too small).

I have thank family and friends for understanding the sensitivity of the disease and how cautious or “flaky” it makes Mom and Dad, so much so, we still hear from time-to-time, “I’ve yet to meet Jack” (sort of like that friend who swears his has a girlfriend but no one has ever seen her and she cannot be found on social media). I really do exist people and Mom and Dad aren’t crazy, well at least when it comes to reducing my exposure to colds, germs, and sickness.

Thanks to everyone who has gotten a flu shot. It won’t make you sick. That’s a myth. Google it.

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Thanks to the doctors at Children’s National Medical Center for…uh…saving my life not once, but twice already with addressing the bowel blockages. Thanks to my Pulmonary Team who consistently monitors me and keeps Mom and Dad up to speed on the medical breakthroughs. Without them and other doctors CF would likely be seen as a pediatric disease. Also thank you for making the process of getting my Vest so easy and painless on Mom and Dad. The Vest procurement turned out to be the least troubling health insurance hurdle to date.

Thanks to my pediatrician for squeezing me in when needed and thanks for not forcing me to wait in the waiting room.

My early December checkup at Children’s went well. My team of doctors says whatever “it” is we’re doing is working and to keep it up!

Lastly, thanks to these guys!

Cleats for a Cause

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Rarely appearing to understand its audience, the NFL got it right weeks ago with its Cleats for a Cause campaign. The NFL allowed players to express individualism which would otherwise result in uniform infractions where players are fined to wear custom cleats that support causes that are important to them.

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Believe it or not, there were actually three players to sport cleats supporting the Cystic Fibrosis Foundation and raising awareness – Jarvis Landry (Miami Dolphins), Shaq Lawson (Buffalo Bills), and Charles Johnson (Minnesota Vikings). Seeing as there are 1,696 active players in the NFL at any given time, that’s roughly .18% of fall players bringing awareness. That’s not too shabby. It would be cool to see MLB and other leagues follow suit. Would love to see Trea Turner pick up the cause. I think it’s a natural fit with his number 7 and all (The seventh pair of chromosomes contains a gene called the cystic fibrosis transmembrane regulator (CFTR) gene.). The CF Foundation is conveniently located in Bethesda, MD. What do you say Trea?

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Each player has reasons for why they chose to raise awareness cystic fibrosis. Charles and his wife were told by doctors that their daughter might have CF. Jarvis lost his “first love” to the disease at age 24. I’ve yet to find out how Shaq was impacted outside of supporting his “little brother Adam Roy”.

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As you can see these cleats are pretty cool. Best of luck to these guys!

Thanks, I’m going to keep fighting cystic fibrosis as best as I can.

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Bustin’ Out The Big Guns to Fight CF
Giving Thanks (post is about two months behind)