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

It’s Been a While…

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Up to no good

Ugh, where do I start. I’ll start with the medical and then hit the fun I’ve had over the last couple months.

Medical – Sorry to Bore You

As anyone who has CF, cares for someone with CF, or is closely associated to someone with the awful disease knows…it is a roller coaster. Further complicating matters for me is the fact that I contracted Clostridium Difficile Colitis (c-diff). While I thought I was in the clear, I was beginning to feel that maybe the Metronidazole by mouth (Flagyl) only suppressed my symptoms (diarrhea, abdominal pains, etc.) and didn’t fully kill off the c-diff because some similar symptoms resurfaced and doctors were all set to start me out on Vancomycin as the next possible medication to try and kill off the c-diff.

Read the papers nowadays and you’ll constantly find articles warning us of superbugs and our reliance on antibiotics. There’s no doubt I’m going to be on more than my fair share of antibiotics, so Mom voiced her concern to my team of doctors at Children’s.

My team of doctors say the easy thing to do is treat. It’s harder not to treat. Ultimately treating is up to Mom and Dad, but hearing that didn’t make things easier on Mom and Dad to make a decision. And because Mom felt I picked up c-diff from Children’s she was losing more and more trust in the care they provided for me up to this point. The decision wasn’t an easy one, but collectively we elected to hold off on treatment and ride it out a little longer knowing I had already proven that I’m a tough kid. Mom also decided it was time to get a second opinion from Johns Hopkins. I’ll explain that visit and what we thought of it vs. Children’s in a later post for those caretakers out there who also wonder the same thing.

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Showing Dad viral videos on JHU’s network

While I can’t be for certain, we’re pretty sure I picked up parainfluenza while at Hopkins. Very shortly after coming home, I began fussing, crying, coughing, etc. So heavy doses of Tylenol and Motrin for about a week and a visit to Children’s for a throat culture. It must of been a bad strain because half of Team Jack ended up getting it (Dad, Bama, Aunt Rachel, and Hayden).

On to the Fun

We’ve been busy as beavers since Easter – first Nats game, bike rides, weddings, beach, fundraising walks, and visiting Dad’s home from growing up.

May 14 – Nationals vs. Marlins (First Game)

The game sort of stretched into my usual nap schedule so I didn’t make the entire game, but we had fun – 6 strong innings in baseball constitutes a quality start. It was a lot of fun watching the pitchers warm up in the bullpen.

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Nats beat the Marlins 6-4; maybe I’m a good luck charm

Comes at a Cost

Going to the Nats game came at a cost. Dad put me to work.

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Helping Dad in the garage

Apr 30/Jun 04 – Fundraising for cystic fibrosis

I can never thank people enough. It’s so much cooler when family and friends get out and participate in the fundraising walks, runs, bike rides, and hikes. So far this year, Team Jack  (Peden) has participated in four Great Strides walks – Alexandria, VA, St. Michaels, MD, and Annapolis, MD, and New Orleans, LA (sorry for the initial omission Seamus, Jared, Wakemans, Bonuras).

More information on future events can be found at CFF.org.

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Cousins JJ and Killian walking in support of me and 30,000 other Americans fighting

Snapchat

Mom and Dad recently discovered snapchat. You would think they took enough photos of me before. SMH

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#BreakingBad #WalterWhite

Jun 18 – Wedding

Uncle Seamus AKA Tamey married Jared in Alexandria, VA thanks to same sex marriage being legalized in the Commonwealth. So happy they did so I could participate as a ring bearer (well sort of) in the wedding. Had they gotten married in NOLA where they live, I might not have been able to be part of the wedding due in part to Mom and Dad not wanting to expose me to germs commonly found while flying.

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I don’t like when sleeves touch my hands

July 04 – Beach

We decided to head to Lewes for the fourth of July.

The salt air had me feeling good and wanting to go back very soon. I think if it weren’t for the traffic woes getting to and from there, we’d be there every weekend.

Surry, VA AKA “God’s Country”

One of Dad’s friends always refers to Texas as “God’s country” but that’s because he’s never been to Surry, where Dad grew up. Founded in 1652, it’s sort of amazing how its managed to remain underdeveloped and keep its rural charm. It wasn’t for a few years ago that the county finally installed its first stop light.

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Mowing the grass in the hot summer sun

We did so much. We went down to the James River, rode the lawn tractor, swam in backyard, fished, and even dropped in on the new winery that opened up across the street from my grandmother’s house.

Just like Lewes, I can’t wait to get back down south to see the family and spend time on the farm. Just wish they could figure out how to improve the flow of traffic on I-95.

Until next time…

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“Yeah, well that’s just my dream…Baseball needs more stars” — Bryce Harper

 

It’s Been a While…