October 2017

IMG_3175
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.

IMG_2682

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!

IMG_3097
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…

IMG_3173

Take a bath you filthy animals!

October 2017

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

IMG_2481

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. 😛

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

fullsizeoutput_1b99
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.

IMG_2330

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 😦

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.

IMG_2569
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.

IMG_2182
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…

IMG_2291
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

IMG_1095
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!!!

IMG_1124
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

IMG_7244
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.

IMG_1188

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).

IMG_1277

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.

IMG_0988

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.

IMG_0881
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.

IMG_0953
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.

IMG_0961
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.

IMG_1003

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

IMG_8144

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.

IMG_0840
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.

FullSizeRender 23
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.

This slideshow requires JavaScript.

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

IMG_0571
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.

https://vimeo.com/208768382 

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.

IMG_0800

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.

https://vimeo.com/208768277 

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

Image result for tom brady combine analysis

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

Terrible Twos and Many Thanks

img_7977
Thanks from the bottom of my heart

Biiiiiiiig Thanks!

So far 2017 is off to a great start. The Metro DC Chapter recognized Team Jack as being very philanthropic – so much so that members from the Cystic Fibrosis Foundation and Children’s National Medical Center have emailed thanking us…so thank to all of you all who made end of year contributions to the cause. Thanks to the handful of my cousin’s friends (Ashley, Bronwyn, Lilly, and many others) who have recently come up to Mom to hand them money to donate to CFF on their behalf. Me and 30,000+ Americans (70,000 worldwide) are so thankful for all that you can give and it gives us hope that one day soon, someone will discover a cure.

img_7928

Terrible Twos

On Wednesday, I turned two years old – “one, two!”Mom and Dad are already feeling the pain. I’m crazier, fussier, faster, and funnier than ever before. We celebrated with a small gathering of family and new friend.

img_7985

2 Year Appointment

Unfortunately, I had to see the pediatrician on my birthday (important to stay on top of necessary immunizations, etc.), but the takeaways we’re positive. I passed my eye test with flying colors. I measured 35.25 inches tall (71%), 27 pounds 10 ounces (60%), and head circumference of 19.14 (60%).

img_7872
So biiiiiiig

Afterward Mom took me to this awesome park, Clemyjontri Park, which isn’t too far from the house. The biggest reason I hadn’t gone here sooner is because it’s super crowded on weekends and holidays. Seeing as my birthday fell during on a weekday and the weather was great, Mom took the day off, so I could spend some time here.

img_7916
This park is so much fun

Talk, talk, talk

Mom is always worried that I’ll be quiet type like Dad, but I’d say I’m putting her at ease with respect to that. I talk a lot.

img_7866
If mom only knew…

I say so many words and phrases I cannot begin to list them all, but I’ll do my best to cover some of my most popular.

  • Colors:  I’m getting good thanks to coloring and eating gummy bears: blue (boo), green (geen), red, yellow (yell-oh), orange, purple (purp-ul), black, pink
  • Numbers: one, two, five, nine
  • New Words: digger, dump, tractor, gummy, paw patrol, beep beep, wheels, bus, truck, car, bang bang, bottle, water, cool, okay, bird, diaper, mixer truck, lawnmower, plane, helicopter, yogurt, outside, park, cheese, bar, squirrel, hurt, heavy, see saw, ball, choo choo, shoot (has mostly replaced my previous favorite word of shit), girls, guys, bunny, money, poop, pee, quack quack (cack cack), buckle, unbuckle, star, moon, wow, cool, alright, hockey, pocket, shirt, shoes, socks, pants, hat, coat, boat, bus,
  • Phrases: Where are you? I will. Water Please. Are going. Come Back. Away! Stop! Go! Cheers! That hurt. Up! Hi! Bye! Bye girls. That’s funny. Dada funny. I’m funny. Biiiig tractor. Biiiig digger. Ummm, yes. Ummm, no. I’m stuck.

Sleeping in my Big Boy Bed

After two years of horrendous sleep for me, Mom, and Dad – Mom finally got me to sleep in my own bed. She lays down with me as I fall asleep and then sneaks back into her room, where Dad is usually passed out.

img_7890
Donald, how about slowing down the tweets bro

Many More Thanks

First, I have to thank Paige’s friend Abby. Honestly I don’t know where people like her come from. Abby is ten years old and had never met me. She only knew of me from her best friend Paige (my cousin). Abby learned that my second birthday was coming up and chose to use one of her Amazon gift cards she had received over the holidays to buy me a ride-on digger. She even paid extra to have it overnighted so that she could give it to me on my birthday. Seriously, who does this!?!?! What ten year old does this!?!?!? All I can say is that her parents must be so proud of their daughter.

img_7991
Paige, Me, Abby 

I quickly need to thank Dad’s company, IT Concepts, who raffled off some tickets to the 13th Annual Brewer’s Ball in Washington DC on March 4th. Mom, Dad, and several friends and colleagues will be in attendance. It’s a great event, benefiting the CF Foundation. If you enjoy food, beer, and silent auction items, you should check it out.

me_and_hayden_bath
Bath time with cousin Hayden

I also need to thank my youngest cousin, Hayden. For her latest school assignment – I have a Dream, she cited her dream for a cure for CF. Hayden just turned 7 and like her older sisters is spreading awareness and raising money left and right for the cause.

haydendream
We share the same dream!

Lastly, I need to thank my oldest cousin Riley. She approached her school about a bake sale for a CF Fundraiser, only to be told by her principal that a Walk-a-Thon would generate more money. While the details are still being worked out, I believe the fundraising walk will be held sometime in April.

me_and_dad
Me and Dad going for a walk on his birthday 
Terrible Twos and Many Thanks

See the Sites DC has to Offer

img_7501

Caps Practice

Dad’s softball buddy, Chuck, showed Dad a video of him and his son at Caps practice so Dad thought this would be a good activity to break up the monotony of Bama and Pop’s Daycare so Bama and Pop took me to watch last week. I watched as the guys skated around the ice. To be quite honest, Bama might of enjoyed the watching these young men skate around more than me. Haha.

img_6134

Big Fun

Mom and Dad’s friends continue to hook it up. The latest score was huge and has proven to be so much fun. With the cold weather right around the corner, the timing couldn’t be better. Kim and Darrell Smith (family friends of mom’s) thought of me as they were clearing out some of their awesome grandparent gear.

By far the prize in this stash are these big, foam blocks that are so big and nearly take up the entire playroom. I’ve already proven that falling off hurts still and have my first bruise from where I jumped onto Mom and we hit heads.

This slideshow requires JavaScript.

They also gave us this cool slide/tower combo for the backyard which will be perfect when I don’t feel like trekking up to Madison Center in the cold.

Photo coming soon…

Poor Hayden, Feel Better

As you all know by now, my family and I are very close. This past weekend, Hayden tested positive for lower-lobe pneumonia. Since she was down in Lewes, DE with the rest of the family (including Bama and Pop) over the weekend, Mom and Dad don’t want to risk Bama and Pop having contracted the pneumonia and pass it along to me, since it would undoubtedly lead to my being hospitalized. Hayden was playing on their phones and watching shows so even Aunt Rae Rae feels this is the best approach. Dr. Shukla said if no symptoms present themselves after four days or so, we’re probably in the clear.

“Better Safe than Sorry”

But more on Hayden. She’s so sweet. Tomorrow is her seventh birthday and while I’m sure all she wants is to feel better now that she’s so sick, here’s her birthday invite to her friends.

sweethaydenbday
People like my cousin Hayden are what makes the world (our country) a better place.

This was 100% Hayden’s idea according to Aunt Rae Rae. The whole family talks about how hard she is to shop for, so I believe her. This shall also serve as a friendly reminder to all my friends and family to GET YOUR FLU SHOTS.

No Sitters ≠ No Fun

While I enjoy time and Bama and Pop’s Daycare, it’s been a nice change of pace and fun hanging out with Mom and Dad as they split up their work days – Dad 630AM-1PM and Mom 130PM to 8PM. Mom totally understands the necessity in splitting up the schedules in an effort to mitigate exposure to pneumonia but feels her and Dad’s relationship resembles…

“Two ships passing in the night”

So the strain on Mom and Dad’s relationship is sort of a byproduct that is often overlooked as well when understanding cystic fibrosis and it’s impact. That said, Mom and Dad handle it well and know it’s only a brief hiccup which they’ll be back to hanging out and eating dinner together in the evenings in no time.

Mom’s idea of fun was to take me to Target so I was able to get a few new trucks to play with and a new sweatshirt. She really likes this new line, Cat and Jack. Has a nice ring to it.

Dad’s idea of fun is to carry me (literally because he’s scared of germs) all around Pentagon City Mall to the Lids store to get a new hat since the previous one he got me is nowhere to be found and then to Whole Foods to get more of my favorite apple cereal bars. I was asleep on his shoulder for the Whole Foods trip so I only know we were there because he told me. The reason getting a hat was so important is because the Redskins hat Dad got clashes with all my clothes Mom puts me in and I need a hat to keep my head warm.

Yesterday Dad and I headed down to the Mall on his bike and ran around and played all downtown. It was a nice change of scenery. We saw the White House, Washington Monument, the Lincoln Memorial, and a few others along the way. We also saw many protesters, but I’m not exactly sure what they were protesting (they chanted this is what democracy looks like). Most appeared to be junior high students so Dad and I were quite confused. At least they didn’t damage any of the monuments like what occurred in New Orleans and other cities following the election.

img_7484
That’s the new African American Museum in the back, left.

Development Update

Totally sold myself short last time in terms of development. I can say so many words and do many more things than I previously disclosed.

Motor: I also love running, skipping, and jumping so I make for a very difficult subject to photograph. I have more hops than most of Dad’s buddies who he played basketball with when first moving to the area. I barely know what it’s like to walk because I’d prefer to just skip or run everywhere. I can get up and down stairs for the most part with little assistance (adults still stand nearby to ensure nothing too dangerous happens). I also can build tall Mega Blok towers though not quite as tall as Dad. I’ve also gotten a much better handle on my battery operated ATV and can ride it around the driveway/patio. I can kick balls. Lastly, don’t leave anything on a nearby table/counter because I’ll reach for it and if I cannot reach it, I’ll push a chair/stool over to grab it.

img_7380
On the run…

Words: Baba (Bottle), Baby, Ball, Bath, Birds, Bak (Bike), Buk (Book), Butt, Booger, Bye, Candy, Cheers, Cheese, Choo choo, Da-da (Dad), Eat, Elmo, Fish, Fist, Hat, Hi, Hot, Mama, Moo, Moon, More, One, See,  Sit, Socks, Shoes, Soap, Quirl (Squirrel), Steak, Stinky, Teeth, Truck, TV, Two, Up, Wawa (Water), Watch, Woof, Work.

I’ll also dangerously repeat words at the end your sentences and may/may not have been known to say “Shit”.

Names I know are Mama, Dada, Yi Yi (Riley), Pay (Paige), Hay (Hayden), Coco (Courtney), Bama, and Pop.

Social: I can feed myself most food – steak with a fork, yogurt by spoon, and gummy bunnies by hand. Drink my own bottles of water and milk. I’m not always an easy eater though.

img_6156
Cry, cry, cry

Cognitive/Understanding: In addition to doing “cheers” with my bottles, dad’s beer, and mom’s wawa (water) I know how to ask for “five” and “fist” (fist bump).

img_6187
Cheers!

I know where my ears, eyes, hair, nose, tongue, teeth, belly button, and pee pee are located. I also know if Dad heads down the basement stairs in the evening, he’s going to pop out next to the garage as he cooks on the grill or throws away trash so I run into my playroom (sunroom) to spy on him from up there.

img_7395

Happy Thanksgiving!

Hope I’ll see some of you over the holiday weekend and if not, I’ll try to update how mine was here on the blog.

img_7410

See the Sites DC has to Offer

August 02, 2015 – Mostly a Photo Update

Aloha
Aloha

Not too much new going on here with me other than I am getting bigger and I’m now six months old. On the scale Dad bought to measure my daily weight, I broke the 17 pound (7.7 kg) mark earlier this week which is awesome. I continue to thrive. I’m also reaching more and more baby milestones (starting to sit up, touch my feet, recognize my name, look weirdly at strangers).

Cousin Paige Feeding me a Bottle
Stop Smiling at Camera Paige, Air Getting in my Bottle 🙂

Here’s a photo of me during a weigh-in. I feel like a prized fighter, minus all the media hype. Maybe UFC’s Dana White can get me on the undercard for UFC 200.

17 Pounds
17 Pounds

Here’s me “strength training” as Dad likes to call it. I’ll jump in this thing several times a day and babble. It’s so much fun. Dad said I have a better vertical leap than most of his friends he played basketball with back in the day.

Jumping Jack
Jumping Jack

Here’s me finding my feet. Sometimes I’ll try and put them in my mouth to which Dad usually reaches over and stops me.

Here are my Feet
Here are my Feet

Here’s me allowing mom to dress me up in an old onesie of my cousins.

This onesie is a bit girly to wear out of the house.
This onesie is a bit girly to wear out of the house, but I’ll play nice.

There are several girls who live in the same neighborhood as my cousins and much to the surprise of their mother, they chose to donate the money they made selling candy at school to my Cystic Fibrosis cause rather than “spend it at Target”. The generosity of such young kids in the Arlington area truly is remarkable.

This beer is for you!
I’ll cheers to that!

Next Doctor’s Appointment: Tuesday, August 4, 2015 for 6-month pediatrician appointment.

Ahoy Matey
Ahoy Matey
August 02, 2015 – Mostly a Photo Update