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

Aug 14 – Sept 11, 2017 |3 Month Check Up

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Lewes, DE (Aug 17-19)

Went down to Lewes for a few days to hang out with my cousins. Had a great time as always. The weather was warm, but overall it was nice. I also outlasted mafia boss by showing her I don’t give in. She demanded I apologize after throwing some tiny rocks at her and she elected to hold/hug me and carry me back to her house from town unless I apologized. Well I played her like a fiddle…not only did I not have to apologize, I didn’t have to walk home. ūüėõ

National Zoo (Aug 28)

Mom and Dad took me to the zoo one morning, before it got too busy. We got there nice and early and saw all sorts of animals. It got warm as the day wore on but overall it was a nice day at the zoo. Mom and Dad carried me around a good amount of the time.

Miscellaneous Fun & Other Milestones Activities

I’ve officially peed in the potty one time to date. Mom and Dad were hoping I would pick this up, but it just hasn’t been a priority of mine. To demonstrate how much I care about using the potty, I

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Texts from Mom to Dad (see dad’s clever pun)

Also got this gnarly shiner one evening hanging out in the living room. Perhaps I should listen to Dad and stop jumping on all the furniture. This thing lingered for at least 3 weeks and there’s still a little indention in my cheek from this thing.

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And for the most part, it’s been business as usual. I hang out with Pop a lot. I work on my tractor. Dad took me to an outdoor movie theater for all of five minutes. Mom and Dad also took me back to Claude Moore Farms in McLean for a quick visit.

Also, I enjoy sleeping in with Mom sometimes, building and painting things and going for ¬†walks in the woods. I also got a new bedroom set and had cousin Hayden over for a sleepover. My new bed has a trundle so friends and family are always welcome and don’t have to share the bed or sleep on the floor anymore.

3 Month Pulmonary Checkup (Sept 11/19) & New Medication ūüė¶

On Sept 11, Mom and Dad took me in for my quarterly checkup. Oh wait, it was rescheduled to Sept 19 and Mom and Dad could not get someone on the phone to let us know when calling to check ahead so they both took off work for nothing.

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Honestly…which way do I go?

After my last Children’s visit (the nasty one I had for staph infection), a weird, very confusing, and inconvenient situation has arose with respect to my health care. Pediatric Specialists of Virginia (PSV) was thrown into the mix. PSV was created in 2003 as part of a collaborative effort between Children’s National Health System ¬†and Invoa Health System, but for some reason something new has taken place which involves me going to both locations and visiting doctors who may/may not have access to my medical records. This makes for longer hospital visits which is not good for me (added exposure of germs, confusion around medical details, etc.) or my parents (trying to schedule work).

Probably worst than juggling through all the scheduling woes was the fact that I have to begin taking a new daily medication – Pulmozyme. The medication must be refrigerated (pain in the ass) and is to be administered through my nebulizer so it’s another breathing treatment to my regiment so add another 20 minutes to life’s breathing treatments. Therefore me, Mom, and Dad have to clean more nebulizer parts and manage yet another prescription. If you’re a glass, half-full type of person, the idea behind this drug is that it is designed to thin the mucus in my lungs so that they are not as sticky and I’m less prone to picking up staph infection/respiratory tract infections. Let’s hope it works!

Naturally like all new medications, this was rejected by insurance, so my doctors have to send information justifying my need for it. It’s been over a week now and I still don’t have my medicine because of the awful medical/insurance industries.

CF Cycle for Life – Oct 8, 2017

Dad’s training is going really well. He biked a total of 16 miles since signing up for this event and has ran a total of 0 miles, played 0 basketball games, and done zero activities/events of cardiovascular health so he should be in pretty top notch shape come the event.

Click here if you want to learn more about the ride or here if you would like to join his team or donate.

Please Get Your Flu Shots

Please go out and get your flu shots. I got mine. It didn’t even hurt. The nurse was so impressed that I didn’t even flinch. Said she’s never seen a 2 year old act so tough.

Outer Banks – Sep 30 – Oct 5, 2017

I’m off to the Outer Banks this weekend with Mom and Dad for our first, real vacation since before I’ve been born. I’m really hoping for some good weather and fishing while down there.

Nationals

Dad and I are going to be out of town for the NLDS (at least first two games) so please make quick work of the Cubs so that I can catch a game of the NLCS and hopefully World Series.

Speaking of baseball, Dad and I have been playing quite a bit of tee-ball in the back yard. I’m getting pretty good at wacking the ball. Dad said he was most proud when he could overhear me telling my cousin how to place hands on the bat – left hand on bottom and right hand on top.¬† I’ll try to throw a video or two up here within the next few days.

Stay safe hurricane victims.

Aug 14 – Sept 11, 2017 |3 Month Check Up

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

May is Cystic Fibrosis Awareness Month

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How many people can we fit in this playground tunnel? #RockTheRed

May is Cystic Fibrosis Awareness Month

As you may or may not know, May is Cystic Fibrosis month. To do our part, we participated in a walk in Harrisonburg, VA last weekend (not technically May). They raised over $30,000 as a walk but it was a bit scary for Mom and Dad as it was difficult to determine who had CF and who did not. Those of us with CF are asked to wear purple and gold “fighter” shirts such as what I’m wearing below, but since Harrisonburg is the home of JMU and their school colors are the same…well, it was a bit scary. Those of us with CF are not supposed to come within six feet of one another as we run the risk of cross-contaminating. CF is a very isolating and lonely disease for this very reason.

We are walking in another Great Strides campaign in Alexandria, VA this coming weekend (May 6, 2017). Details for¬†the walk can be found here. There will be free food and drinks provided by local businesses. So far, we’ve raised over $11,000 for the walk this year and are leading all teams participating. Thank you!!!

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Lawnmowers! Lawnmowers! Lawnmowers!

Dad¬†is also attempting to utilize some of the other mechanisms provided via the Cystic Fibrosis Foundation (CFF) to establish my legacy. Dad¬†set up the following fundraising site that allows for anyone to donate any amount of money at anytime in my honor (anonymously or not). The site is everlasting and 100% of all money donated goes to the CFF in hopes of one day finding a cure. In just 26 months of being alive, my friends and family have helped raise over $20,000. The idea here is that we’ll always have a sense of how much we/you/everyone has contributed over the years to helping us find a cure in my honor.

We also launched a T-shirt campaign using Booster (a subsidiary of CustomInk). It was incredibly successful and we raised over $1,800 for the Cystic Fibrosis Foundation in their fight for a cure. In addition to the funds that were raised, a lot more folks get to spread awareness to this disease by wearing this cool T-shirt. A big thanks to Eric Hooper for offering up his design services.

So if you missed out on a chance to order one, hit my dad up…he’ll probably end up ordering a few additional shirts for folks that didn’t find out about the campaign until after it ended.

And if walks or t-shirts, aren’t your thing…feel free to pitch an idea to my Mom or Dad or try to get then to sign up for the CF Hike, CF Bike, or a Fundraising Happy Hour – those are always fun!

Speaking of Awareness – Did You Know?

Cystic fibrosis (CF) is the most common inherited disease affecting the developed world, with one in every 2,500 children affected. It is a multi-organ disease, affecting the lungs, gut, liver, pancreas and reproductive tissues. At present about half of those with CF will die by their late 30s from lung disease.

Why We Fundraise & Why We Can Never Give Up

We fundraise in hopes that one day there will be a cure for cystic fibrosis. Lately, there had been a lot of hope behind PTC’s Translarna (ataluren), but recent¬†news certainly let many of us in the CF community down. While reading that a company is stepping away from searching for a cure for CF and that the drug was scrapped due to less than stellar success, it only means one thing – we cannot give up. Take a look at what Jimmy V was able to do for cancer.¬†In just 24 years, The V¬†Foundation alone has raised over $150M for cancer research and thousands of other non-profits have done there part as well. While I do not have the platform yet of Jimmy V, I do have an amazing group of family and friends the have been there for me and my Mom and Dad since Day 1 and I want to thank everyone who has ever donated on my behalf. I cannot thank you enough.

My Cousins Continue to do their Part

Riley, Paige, and Hayden all continue to do a great job with fundraising. Earlier this week they raised $78 on a lemonade and snack stand at their school.

And Dad…

Took his spreading awareness to a whole new level

On a Lighter Note – Funny or Not

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Dad acting like Sidney Crosby and dropping to the ground

 

Mom really thought it was funny when I kicked Dad in the nether region. Dad, on the other hand, did not find this funny at all. He probably laid there for a solid three minutes before catching his breath while I ran around him gloating. While that may or may not be funny to you…we can all agree on one thing that is not funny – cystic fibrosis.

There is nothing funny about cystic fibrosis. When you have CF and you get a cold, you have to spend so much extra time doing therapy that you miss out on the fun things in life like going to the park and stuff. When I’m sick, we do double therapies which equate to about two hours a day (not counting the time it takes to sterilize parts, etc.).

Easter

Easter was cool. I got lots of candy and a scooter which is fun to ride. I mostly danced around the house all morning and played outside with Dad’s drills in the¬†afternoon.

I also hung out with Paige on the neighbor’s swing.

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DC Sports Minute

@Nats – Harper, Zimmerman, Turner, and Murphy are going gangbusters. It such a bummer to lose Adam Eaton for the season after the start he was off to and he can’t really be replaced, but the team seems ready to step up based on Rendon’s 6-6 performance on Sunday. Let’s hope for a deep playoff run. Speaking of…Nationals are officially undefeated in games I’ve attended.

@Caps – Toronto certainly gave us a scare and it isn’t looking good down three¬†games to one. Hopefully the Caps pull out the series and move on to the Eastern Conference Finals. Not counting on it, unless more guys start skating with the passion that Justin Williams does each and every night.

@Wiz – ehh…the Celtics handled them in Game 1 and 2 and even if the Wiz were to slip past the C’s, they would be no match for the Cavs.

Did you Notice?

You didn’t did you? Well I got my first major haircut (that wasn’t a trim with household scissors).

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Hopefully I’ll see those of you at the walk or around a ballpark this summer.

May is Cystic Fibrosis Awareness Month

St. Patrick’s Day & April Fool’s

Surrounded by Great People

Me, Mom, and Dad are surrounded by great people. Thank you everyone who has donated to my Great Strides Walk coming up in about four¬†weeks in Alexandria, VA. We’ve nearly raised $6,500 this year and $20,000 since I was born back in Feb 2016. Thanks Sean (pictured right¬†below) and his unknown golf partner and their generous donation to the CF Foundation in my honor. That biiiiig check is so cool.

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Did You Know?

The pulmonary clinic that I attend waits for thirty minutes between patients so that the room is safe of bacteria from patient to patient. We learned that at my last appointment and found it to be quite interesting.

Daycare Drama

Daycare has been a bit different lately. About three weeks ago, Bama went into the hospital for a “routine” arthroscopy to repair a patella clunk in her right knee that she had replaced nearly a decade ago. Physically nothing appeared to be wrong with the knee, but the doctor suggested that could address the clicking noise it would make when she bent it. She was in and out in no time, but after about a week or so…her knee was sore and she thought something was wrong. Fast forward another week, and she spiked a fever and couldn’t move her leg. Bama’s leg became infected and she needed to have another surgery schedule to clean the knee and remove the infection.

After about a week in the hospital, she¬†came home, but had a port and needed to take IV antibiotics (similar to me back in the day), but then she spiked another fever and was readmitted into the hospital. She’s been back in for about five days while we await her blood results. She is stable and appears to be doing well. We hope she gets out tomorrow.

Thankfully Dad is between work projects and has had some added time to spend with me during the days to give Bama and Pop a break. One day, Dad thought it would be a good idea to take me into Toys R Us since there wouldn’t be anyone in there during the day on a weekday and little did he know that meant I would play on the train station for about 20 minutes until he picked me up and then watch me go in and out of every toy truck for 30 minutes. We spent over an hour in the store and it was great. Dad has also been taking me to new parks as often as he can.

It goes without saying that I am spending a lot of time with Mom. Mom is definitely spending the most time with me, especially as Dad’s softball seasons are starting back up and Dad still needs to go into the office to work on proposals.

St. Patrick’s Day Reminders

St. Patrick’s Day was a reminder that Dad is much older than he remembered. He thought it would be a good idea to host a work happy hour at an Irish bar in town, only to realize that a) music is too loud, b) bathrooms covered in pee and puke are not a selling point, and c) $10 covers to overpay for Guinness, Irish Car Bombs, green beer, etc. simply doesn’t make sense, so he opted for a sports bar nearby to watch NCAA March Madness. It also served as a reminder that IT companies are not the best when it comes to brackets, super bowl squares, etc. Ugh.

For me, St, Patrick’s Day was a reminder than my youngest cousin Hayden is so sweet.

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Hayden’s¬†Luckiest Day School Project

Mom & Dad Don’t Stress

“Most kids eat mac and cheese. Most kids eat grilled cheese. Most kids eat chicken nuggets. Most kids eat…Our kid won’t eat anything besides f***ing apple cereal bars, vanilla yogurt, cashews, beef jerky and grilled steak. He’s going to end up with a f***ing feeding tube!!!” – Mom

“I know dear, but I don’t know what else to do.” – Dad

Alright Mom and Dad, I know I’ve been a bit stubborn¬†when it comes to eating, but I’ll try and do better to avoid a potential feeding tube. Truth is I do eat a few other things from time to time, but I’ll try to do even better. I understand that this is added stress that isn’t fair to you two. You two forget that I like waffles, chicken from District Taco (sometimes), french toast, not to mention I love when Dad makes pancakes – especially digger pancakes.

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Digger, Fish, Crab, Dump Truck (counter-clockwise)

Bonnie’s Beach

While there are no photos that this ever happened, Dad and I did swing by Lake Barcroft AKA Bonnie’s Beach to see “Northern Virginia’s Best Kept Secret” according to her. When Dad was boring and talking about work, we played in the sand with my trucks, ate lots of gummy bears and ran all up and down the beach.

April Fool’s Day

I started using the potty! April Fool’s! Mom and Dad still change my diaper, but I say “poop” a lot these days.

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Enjoying all the natural light that comes into the house now that the magnolia tree has been removed.

DC Sports Minute

The Capitals took down the Rangers and Holtby had a shutout as the Caps locked up the President’s Trophy. Hoping this is the year! Wizards continue to vie for a top three seed. The Nationals are looking good out the gate as they won their first two and appear to be clicking on all cylinders.

Wicked Smaaaart

I can count. I’ve counted as high as twelve multiple times. Counting to ten is super easy.

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Hope to see you around town or the ballfields as I cheer on Dad. Also, let’s pray for Bama to have a speedy recovery!

St. Patrick’s Day & April Fool’s

Two Year Anniversary

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Two Year Anniversary + Checkup with Children’s

At times it’s hard to believe, but today marks the two-year anniversary of being released from the NICU at Children’s National. While Children’s National is a great place in terms of saving lives and treating those in need, I prefer being outside living it up.

My scheduled check up with Children’s was set for Tuesday, March 14, but since there was winter weather in the forecast, the doctors weren’t sure if the clinics would be open, so they asked us to come Monday afternoon to the Fairfax, VA location. Unfortunately, this meant I did not get to see Dr. Shukla (more on this later) or the other members of my team such as Allison and Carol and Beth. That said, I did meet with Dr. Sami and we had a much easier commute than normal and enjoyed a far less busy facility in flu season which was another plus.

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Shoveling Mom and Dad’s¬†Walkway

Dr. Sami listened to my lungs and indicated that they sound really good and clear. That is probably thanks in part to Mom and Dad’s diligent therapy routines where they allow me to do the vest in the morning, but still force me to do manual in the afternoons. Mom and Dad really would love for me to start wearing the nebulizer mask like other kids, but I think I’m grown and fight them on it. For all you other CF parents out there, try to mask train your children as early as possible to avoid this conflict. The vest is second nature to me as Mom and Dad allow me to watch shows during this time and they eased me into the vest when I first was eligible to begin using one. My height and weight are up again from my last visit so that too is encouraging! Per usual, we’ll await on the throat culture before we have a really complete report, but all things are pointing toward a good checkup.

So remember what I said about coming back to Dr. Shukla…he broke it to Dad over email that he’ll be moving on in about three months so if I stay healthy and out of the hospital, I’ll only get to see him one more time before he moves on to a new hospital. Me, Mom, and Dad are going to be sad to see him move on.

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Mom’s response to Dad forwarding along Dr. Shukla’s news

Medications & Therapies

It’s been a while since I’ve spoken about my medications, but not much has changed. I continue to do chest physiotherapy twice daily (one by vest, one by machine) and a nebulizer with albuterol sulfate held close to my face (since I refuse to wear the cute masks). I take four 6,ooo unit Creon (pancreatic enzyme) pills prior to each meal feed. Sometimes I’ll take a snack dose. I take 2mL of vitamins ADEK daily. I also take 1-1.5 tablespoons of Miralax daily to help soften my stool and avoid bowel obstructions. Even though it’s not prescribed, I take a probiotic pill daily in hopes of keeping a healthy guy. The other thing that’s not prescribed which I do an awful lot of is running around and jumping on my trampoline. Those are great workouts for me.

And lastly, daycare for me is still Bama and Jim’s house at Madison Manor park. I don’t go to actual day care and am so lucky to spend each and every day with them. Here, I make them dance.

Lewes, DE (Feb 18-20)

Thanks to climate change, we took advantage of some nice weather and headed to Lewes to Aunt Rachel’s beach house. We enjoyed a really nice weekend¬†at the beach. We saw fire trucks, played at the beach, ran up and down the pier, went on short bike rides.

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While there we stopped by the fire house to look at the tracks.

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Biiiiig Fire Truck

Because it was the offseason, we didn’t have to pay to enter the park so me, Mom, and Dad ran down the ¬†pier at Cape Henlopen. No one was fishing and the tide was extremely low while we were there. There were some folks metal detecting along the beach. Not sure if they were finding anything but apparently some coins from old ship wrecks are found in and ¬†around there.

When I say I ran…I ran when at the pier…I mean I ran! Dad said I’m like Forest Gump.

Bike Ride around DC

Don’t be fooled by the three inches of snow and ice we received in March. Climate change is real and it allowed us to go bicycling in DC to take in some cool sites and see some memorials up close. Some of the cherry blossoms had even begun blooming! With as crazy as the weather has been lately, I’m not expecting much in terms of beautiful blossoms this year.

Maja also came by for a visit and we went to see the owl at the nearby Gulf Branch Nature Center. I also celebrated Mardi Gras in a big way this year. Thanks Pam for the awesome shirt.

 

DC Brewer’s Ball & Bishop O’Connell Superdance

Big thanks to Dad’s employer, IT Concepts, for supporting several employees attendance at the event and providing a great evening. DC Brewer’s Ball raised close $300,000 again this year (it was in the mid-high $200’s last I saw). Dad’s boss even won an autographed Mike Tyson glove (pictured below). Big thanks to all who donated items, their time, etc. to pull off such a nice event.

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Me and Mom shot a video for the the Bishop O’Connell Superdance fundraiser which took place in the first week of March. So far those amazing high school students have raised over $105,000 this year and they’re still going! Keep up the good work!

Here’s one of me and Mom’s outtakes…

Fundraising – Great Strides Walk

As mentioned in my previous post and as we do every year, we’ll be raising money for cystic fibrosis in hopes they find a cure that could one day save my life as well as the more than 70,000 people living worldwide with the disease.

Click here if you wish to see my Dad’s fundraising page. Jack’s Pack¬†has raised nearly $5,000 for this walk already. To everyone who reads the blog and who has donated already…thank you, thank you, thank you so much. I honestly cannot thank you enough.

For those who have nothing better to do or wish to join me and others, the walk details can be found here¬†(or see below for convenience’s sake).

Date: 5/6/2017
Event: 10:00 AM
Distance: Maybe 1-1.5 miles
Event Location: St. Stephen’s & St. Agnes Lower School

Quick Vocabulary Update

So I know I’ve been trying to keep a running list of all the words I say, but it’s hard. I’m probably saying 2-3 new words per week and playing some pretty funny sayings nowadays, so I’ll try to list off one word for each letter, from A-Z.

Alexa (as in Amazon Echo), Black, Cardinal (as in the bird), Digger, Elmo, Funny, Girls, Heavy, I, Jump, Key, Love, No, Owl, Pecker Bird, Q, Roller, Sexy (as in sexy mama), Truck, Up, V, Water, X, Yellow, Zebra

Didn’t think I actually said, “Sexy Mama” did you…well here…take a look. Here’s the safe for work version.

So that’s it for now…well aside from me giving you a DC Sports Update. Bryce leading the Spring Training in HRs (I’m expecting a huge year), Capitals still leading the Metropolitan Division with hopes of a Stanley Cup run. Wizards are doing well, but I’m not much of an NBA fan. Skins are a dumpster fire.

Mom and Dad…who am I kidding…mostly mom and my cousins have become slightly obsessed with SnapChat. Here’s one of my first snaps…

If I don’t see you at the walk, maybe I’ll see you at one of Dad’s ballgames and or around town since flu season is almost out of here :). Until next time.

Two Year Anniversary

Super Bowl Sunday Edition

 Delivering MVP Performances

Two years ago (+4 days), Tom Brady delivered his fourth Lombardi trophy to the city of Boston while Mom delivered¬†me at Virginia Hospital. Unlike football fans and pundits who debate the¬†Greatest Of All Time (GOAT) in the NFL, there’s no question who delivered the best moment of 2015 – Mom. After today, Touchdown Tommy will put the doubters to rest and he’ll be considered the Michael Jordan of the NFL – GOAT!

This post serves a secondary purpose as well – let the world know how I stack up against Tom and allow for some of those friends and family no on Facebook or the gram see some videos of me.

You wouldn’t believe how much we have in common. My mom, Bridget shares the name of your first baby mama. Bridget Moynihan, who gave birth to a boy – named Jack. You then named your second child Benjamin – same name as my Dad. This is just weird.

Controlling the Huddle: Jack > Tom

  • Tom:¬†Understandably deserves¬†credit for being an great on the field general and leading his team to countless victories.
  • Jack: But no one controls a huddle or commands attention of those in attendance quite like I am able to do.

Pettiness (cry baby): Jack > Tom

Size: Jack > Tom

  • Jack: 35 1/4 inches tall (71%) x 27 pounds 1o ounces (60%) x ¬†19 1/8 inches head circumference. Doctors say I’m measuring well.
  • Tom:¬†Draft experts described Tom Brady as¬†Poor Build,¬†Skinny, Lacks great physical stature and strength, Lacks mobility, Lacks a really strong arm,¬†Can’t drive a team down the field

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Speed: Jack > Tom

  • Tom:¬†Check out his NFL combine 40 yard dash¬†where he clocked a 5.28. Haha
  • Jack:¬†Nightly Rivercrest 5K says it all. Watch me smoke my cousin Hayden who’s 5 years older than me.

Arm Strength: Jack > Tom

  • Tom: Good arm, but draft experts say he lacked strong arm.
  • Jack: Has a cannon. Will likely contest Tom’s GOAT status if he doesn’t decide to go with baseball after being drafted out of high school. Tom’s record is probably safe since concussion are scaring everyone away from the gridiron.

Strength and Physicality: Jack > Tom

  • Tom: Draft experts claim he’s never seen the inside of a weight room.
  • Jack: Discovered weight room early

Money: Tom > Jack

  • Tom: Makes millions a year playing football and with endorsements. Not going lie…Uggs is quite a weird sponsor for you Tom.
  • Jack: Raises thousands of dollars for cystic fibrosis.

Agility: Jack > Tom

  • Tom: probably does yoga and has a good downward dog.
  • Jack: you probably can’t tell based on this video, but experts suggest I display an uncanny ability to maintain balance in this video.

Ability to Power through Defenders: Jack > Tom

  • Tom: Really good at going for it on fourth and ones. Probably the best of all time.
  • Jack: Video here shows my ability to power through a defender and than use my speed to get out into to the open and outrun the defense for a score.

Vertical Jump: Jack > Tom

  • Tom: 24 1/2 inch vertical.¬†
  • Jack: Probably 36 inches.

Getting ready for Baseball

Pitchers and catchers report in 8 days. Working on my switch hitting.

Best of luck tonight Tom. Not everyone can be blessed with these God given abilities. Bring home number five! Silence all the skeptics who still don’t consider you the GOAT yet. Me, Mom, and Dad will be watching – just like 2 years ago.

Super Bowl Sunday Edition