October 2017

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Hollywood

Outer Banks (October 1-6)

I had such a good time in the Outer Banks. The weather was sunny and the highs ranged from 70-78 each day. There was a steady breeze every day as well so I never go too hot while on the beach. Some nights actually were a little cool for Mom.

We stayed in Kitty Hawk (Mile Post 3.5) where there was a beach widening effort going so that meant lots of trucks! There were front end loaders, bulldozers, and water pipe trucks. The pipe stretched far along the beach and out to sea. There were boats that patrolled over small areas of water, pumping (dredging) sand back toward the beach so that the beach could be expanded. Dad read an article at one point and said the effort was costing millions of dollars.

Dad and I dug water pipes on the beach. A water pipe is a small ditch that leads all the way from the ocean all the way up to our huge sand castle. It was so much fun.

We went to the Roanoke Island aquarium, located in Manteo, NC one morning. It was great going on the offseason because we pretty much had the place to ourselves. We saw sharks, alligators, sting rays, jellyfish, puffer fish, sea turtles. The museum was really cool because they actually nurse giant sea turtles back to health that are injured. There was this one turtle that was hit by the prop of a boat and she had been there for months, but the staff hopes they’ll release her back into the Atlantic Ocean before long.

We have to thank the Monahans for opening their home and hearts up to us and allowing us the most excellent vacation we’ve had as a family of three to date. It was our first vacation as a family where we’ve left town for more than just a long weekend. It was also the furthest we’ve been away from Arlington since I’ve been born as well.  Hopefully more exciting travels are in our future for our family and I hope they all include beaches and trucks.

One of the cooler non-beach activities when at the beach was going to the different fishing piers, but one in particular because it had an arcade. The Avalon Fishing Pier, located at MP6, was just a short little ride down from where we were staying so I think Dad made us go every night because he wanted to see what the fisherman were catching on the pier. Dad tried surf fishing from the beach, but didn’t have much luck thanks to a combination of mostly east wind, some turned up surf from hurricanes which had recently passed, and the beach widening effort which was still ongoing. Anyway, the arcade was awesome. I played so many games – wack-a-fish, skeeball, truck game and with each game I played, I won tickets. I won so many tickets at this one game! I then traded my tickets in for lollipops each night and we walked along the pier at sunset.

Just because we’re on vacation, it doesn’t mean I can stop doing my treatments. Here I am with my vest and my train track and some new trucks since Dad left mine at home. That’s a front-end loader, cement mixer, anchor truck, a dump truck, and a log truck.

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Another fun thing was going and seeing all of the lighthouses (with the exception of Ocracoke because we weren’t driving that far and riding a ferry). Being drug to lighthouses as a kid, Dad assumed I wouldn’t like it as a kid either, but Dad had the foresight to bring a soccer ball for us to kick around on the grounds. Dad said the park service must of spent some serious money on the lighthouse grounds because he remembers just getting spurs stuck in his feet and no grass to play along. That’s all changed now and I was able to walk into two of the three lighthouses we visited. I could not climb Hatteras Lighthouse because I was too short :(. Maybe next year, I’ll be tall enough.

We went out to eat nearly every night. Probably one of the more, underrated restaurants for children was the Outer Banks Brewing Station because they had a outdoor boat/fort I could climb into and ride down on the slide. Dad and I also played lots of corn hole and Dad drank beer crafted from wind powered windmill.

Currituck Beach Lighthouse

Bodie Island Lighthouse

Hatteras Island Lighthouse & National Seashore

Hopefully next year we can do something similar. Granted, it will probably be slightly different with a baby sister tagging along.

Great Grandma’s 96th Birthday

The timing heading back from the Outer Banks to Arlington couldn’t of been more perfect as it allowed us to swing into the Richmond area to wish my great grandmother a happy birthday and say hello to the rest of the Peden family. Sort of funny was when a member of my extended family rattled off to Dad, “this is the mysterious Jack. It’s my first time seeing him in person.” In a way, that mysteriousness sort of comes along with CF since I tend to avoid large crowds, gatherings, and the indoors during cold and flu season. Anyway, it was great seeing them all!

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Great Grandma appears to be elusive as well. No photos of me and her on Dad’s phone. Just me and a dump truck that my Grandfather gave me.

Cycle for Life (October 8)

Dad’s grueling training routine (2 bike rides totaling maybe 30 miles) leading up to the ride, consisted of digging, building sandcastles, proposal writing, proposal writing, oh and more proposal writing.

The ride itself was interesting. A few takeaways from this year’s ride. It rained the entire ride and there were probably still 80 riders who came out to support the cause. Dad even ran into my former doctor, Dr. Shukla. Mom was torn on how excited to get because ultimately she felt like Dr. Shukla and her had a bond which could not be broken, yet he was riding for some other team. Dr. Shukla, if you’re reading this, Mom wants you on our team next year…got that? The other interesting thing was apparently locals turned some of the small, yellow arrow signs used to navigate riders in a manner which sent the 65 milers on a path that was not part of the course. Dad and many other riders got lost. Some riders got lost multiple times, even following misplaced yellow arrow signs down a gravel path to a yard sale. I think this probably upset the more serious riders, but for riders like Dad who didn’t have bike shoes, or a road bike, or anything more than a borrowed bike, a bike helmet, and one bottle of water, he got a good chuckle out of it. Dad didn’t seem to do too bad overall.

Also, as Dad was recently at his company’s offsite, leadership said that the Cystic Fibrosis Foundation and the Cycle for Life will be to causes that they look to get more involved in through volunteering and company-wide participation. I’d also like to thank each and every rider who rode in my honor. I’m sorry I didn’t get to meet any of you, but given the weather that Sunday and expected finish times were around my nap time, I just couldn’t swing it. Definitely count on me being out there next year…so long as it’s not raining.

Here is the scheduled routes (maps). And here’s Dad’s route? Dad only biked 50+ miles because of the lack of signage (apparently missed the lower loop). Overall, he seemed to do a much better job than other riders who opted for the 65+.

Please support awesome sponsors such as Old Ox Brewing, Charles Schwab, Clark Construction, Genetech, Walgreens, and many, many others. Thank you all!

How not to Train for an Event from Dad

It’s probably not advised to…

  1. Sign up to bike more miles than you’ve ever ridden before (Dad had done 50, was scheduled for 65).
  2. Sign up for an event where you are borrowing necessary equipment (Dad borrowed a bicycle).
  3. Sign up for an event requiring use of body part(s) that have been badly injured within 100 days (i.e. Dad ruptured quad 3 months before bike ride).
  4. Eat pizza, drink beer, watch playoff baseball the night before the event.
  5. Maintain a consistent diet of beer and fried food in the weeks, months, years leading up to an event.
  6. Stay up late at night, glued to your computer, and not so much as moving muscles outside of your fingers for the weeks leading up to the event because you’re writing proposals.

Potty Training

It’s going better than the DC sports in the playoffs. I’ve peed in the potty multiple times and even pooped in the potty. Mom and Dad are really hoping I’ll be fully potty training prior to my sister getting here. Dad says he won’t be buying boys and girls diapers, so I better hurry up and get this potty training thing figured out because I don’t want to wear little pink diapers.

Vocabulary

My vocabulary has really taken off. I say lots of words, sentences, and pretty much communicate to get anything I want or explain anything that’s bothering me. I know my medications – Creon, Miralax, Pulmozyme, Albuterol. Lately, I’ve been telling everyone “You’re mean”, “I want to go home (even when I’m home)”, “I need that”, and “Go away”.

Nationals (October)

Well, that was short-lived. Seriously! What the heck Nationals?!?!?!

We missed Games 1 and 2 because we were on vacation, but Dad took Maja (his mom) to game 5, since the start time didn’t begin until 8PM which meant the game would end well past my bedtime. Dad said Maja looked at him like he was possessed and that there was no way in which he could be her son. Dad warned her that she wasn’t ready for this behavior. Mom hadn’t been to a playoff game or seen playoff atmosphere or seen Dad root uncontrollably through nine grueling innings and act like the most superstitious fan in the park. Dad reminded her that fan is short for fanatic. It wasn’t until the ninth inning before Maja began to wave her free rally towel and “come around” as Dad likes to say. We have a new skipper and Harper coming back so hopefully we’ll get over the hump next season.

Halloween

I was supposed to be a construction worker, but all I wouldn’t wear the construction helmet and safety vest so I more resembled a kid playing with construction trucks. Maybe next year I’ll dress up. I certainly will be helping out with the jack-o-lanterns like I did this year. Little known trick, using a drill makes it easy and fun.

GREAT NEWS!!!

The new median age is up from 41 years old to 46 years old. This was a recent announcement made at the North American Cystic Fibrosis Conference this first week of November. While it’s easy and perfectly fine to get excited, we also have to maintain proper perspective. It’s hard work on those of us with cystic fibrosis and its hard work on the care takers that give us everything they have. It’s important to know that there still is not a cure and we cannot stop until there is a cure. So let’s keep fighting! I thank each and everyone of you for all you do for me. We’re getting so much closer!

Until next time…

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Take a bath you filthy animals!

October 2017

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