Merry Christmas, Happy New Year & Happy Birthday & The Best Gift of All…

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John Deere Gator – Christmas 2017

Merry Christmas

Merry Christmas everyone. I was a really good boy this year so Santa brought me a ton of gifts. He got me a John Deere Gator to replace my John Deer tractor that I broke from riding so much. The good thing is that I got the same brand so I can swap out the batteries and maximize riding time. I also got a lot of trucks to play with. Mom and Dad are making me keep my big, metal Tonka trunks out in the garage. Mom, Dad, and I all agree that the best gifts are donations to the CF Foundation and we received several of those to wrap up 2017.

Happy New Year

2017 was a great year I think (not really sure, because I’m new at this), but we follow a lot of CF’ers on social media and there are a ton out there that would trade places for the year I had, so I’ll take it. I only had one lung infection which was quickly addressed with antibiotics over the summer and I did not have any hospitalizations.

Hoping 2018 is even better, but this flu is super scary. This year’s flu has been one of the worst ones in recent memory and there’s still no sign of letting up. Because it’s so bad, I pretty much avoid all public places (especially indoors), and at times even friends and family. Mom and Dad remain extra careful too – washing their hands religiously and wiping down all surfaces. People who don’t fully understand the disease may think we’re weird, but we’re just trying to be safe.

It’s not you, its me.

Technically, its me, Mom, Dad, and everyone close to me that knows that colds and flu are absolutely horrible for me. So until this flu sort of moves on, you can expect me to remain in isolation – only really being seen at Bama and Pops, Williamsburg Middle School to play soccer with Dad, hiking outdoors, or at my house. Please do not invite yourself over to our house if you have a sniffly nose or think you might be sick. You’re not welcomed! If I get sick, it can lead to irreversible damage to my lungs and requires that I do double the therapy treatments.

7 Day Photo Challenge

I’m sometimes late to the viral things out there, but here’s my 7 days photo challenge. From as best I can tell, the rules are that the photos must be black and white and not feature any people or explanations. I’ll be no different than anyone else who does this challenge by adding explanations, but that’s only because this is intended to be part educational for my readers. Not pictured but probably equally as important and part of my everyday life would be Butter and Salt and Miralax.

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Turning Three Years Old

A few weeks ago, we celebrated my third birthday at Bama and Pop’s house. As you can probably imagine, my favorite gifts were the trucks, play doh, kinetic sand, and donations to the CF Foundation. Even my cousin Paige asked that instead of toys from her friends, that they make small donations to the CF Foundation which was super cool of her and her friends. Bama got  me a snow plow despite Mom and Dad’s requests for no more trucks. Since Andy was out of the country and Bama and Pop were heading out of town, my birthday was lightly attended and celebrated on Thursday night.

Uncle Andrew did stop by for a day on his way back to Hawaii from Europe so that was a nice surprise.

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Dad’s birthday chainsaw and mine from Christmas

Baby Sister

In anticipation of my sister’s arrival, Mom and I picked out a color and Dad and I taped off. Because Mom and Dad didn’t want the paint to bother my lungs, Mom took me to Bama’s house while Dad knocked out the painting. To keep things extra safe, Dad opted for Benjamin Moore Natura Zero-VOC and Zero Emissions paint and the gentleman working the counter at Potomac Paints in Arlington gave Dad the contractor discount when purchasing. Dad let it air out and I returned home to see. Looks pretty good if you ask me.

On Feb 15 at 10:00PM when Mom started having contractions, so Dad drover her to INOVA and left me at home with Bama. Aunt Rachel also went with Mom and Dad.

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Taylor James Peden –  February 16

Born February 16, 2018 at 4:25AM, she weighed 7 lbs, 10 oz and was 20 inches long. Most importantly, we doctors believe she’s healthy. Given that it was flu season, I did not go to see her at the hospital. Dad came home that afternoon to hang out with me and ensure I did my therapies while Mom and Taylor rested at the hospital. And then Mom and Dad brought home my baby sister. Her name is Taylor James Peden.

Unlike with me, Mom and Dad had a “normal” labor, delivery, and hospital experience with Taylor. Taylor was discharged about 36 hours after being delivered which is a vast improvement from my 45 days in NICU. Mom and Dad say it is a bit surreal and equally terrifying driving home with an infant after only two days of life. At two days of life, I had already had my first surgery on my bowels. In a way, Mom and Dad had been spoiled by all the great nurses from Children’s from my entry into the world and it was almost as if they were first time parents. If Mom and Dad had it to do over again, baby Taylor is certainly the way to go. Mom is doing unbelievably well also. Taylor was far more gentler than I was and didn’t give Mom too much trouble during a super quick labor. Perhaps in a future post, I’ll try to recap the differences between the two experiences.

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Here’s one more photo of baby sister trying to give me a hug and kiss.

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It’s only been a few days, so Taylor and I are still getting to know one another but I love her and I think she likes me too. I enjoy reading and singing to her, but I won’t let her use my blankies. I asked her what type of truck she likes, but she doesn’t talk. She sleeps a lot. Whenever I hear her cry or make noises I run into the room and make sure she’s okay.

Once baby Taylor opens her eyes more, I promise to post good photo of us here.

For those of you on social media…you probably can get a better fix of photos and updates by following Mom on Instagram – @bridgetpeden. Dad has an account too, but isn’t as active – @benjamin_peden.

Drug Breakthrough – Vertex Symedko

Just before Taylor arrived, I had been reading up a recent breakthrough on a new Vertex drug, Symedko. which was recently approved by the FDA. While it doesn’t specifically target my mutations, it is a step in the right direction and helps so many others fighting this horrible disease. Thanks everyone who continues to donate and support the fight.

Going to try to get some rest. It isn’t too easy with baby sister running around the house.

Merry Christmas, Happy New Year & Happy Birthday & The Best Gift of All…

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

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

Merry Christmas & Happy New Year

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Obligatory child photograph with string of Christmas lights

The last post was really delayed. Here’s another one that’s overdue, but I’m committed to getting all caught up and staying on top of my posts. I promise to try and do better as my Cousin Riley and Paige have been telling me how their friends at school check out my site and are always asking about me. I’m doing well, just been super busy, but I guess they’ve been telling you all.

Last year, right before Christmas I was in the hospital for two weeks with a bowel blockage. Thankfully I got out in time for Christmas last year and Dec 20 of this year marked a full year without any hospitalizations! Most people probably take no hospitalizations in a year for granted, but for those with CF, it’s sort of like those “__ number of days without incidents” signs you see hanging up around the workplace.

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The thought of bringing it up is a bit like baseball players talking about throwing a no-hitters…Dad and I rarely want to talk about it. At any rate, I’m doing really well and the last year was a blast and I’m looking forward to turning 2 years old early in the new year and continuing my stretch of good health and keeping my visits to Children’s National Medical Center as check-ups only. My personal goal is to be the Ironman for this with cystic fibrosis and avoid hospitalizations for as long as possible.

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No better sign of being in good health than when Mom texts Dad this. Haha

Christmas

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Not sure whats more pitiful, the tree or lack of gifts

I was much better this year at opening gifts than last year and I received much more gifts as well. Everyone asked what I wanted for Christmas and what they could get me. It was quite simple actually – Trucks, Tractors, Diggers, Paw Patrol, Caterpillar, John Deere.

 

While Santa got me about 4 trucks, family and friends probably got me another 25 or so trucks. I have trucks in every room at home and at Bama and Pop’s house. Some of the trucks move around and play music.

Even had a little fun with this doggie while making holiday rounds.

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I know I still have to get south to see Dad’s side of the family, but we’re trying to target a weekend which isn’t calling for winter weather. We had our first snow the other week. While it was small, Dad and I still got out to shovel the walks of our house and the elderly lady next door.

New Year

I’m a party animal. I stay up late and usually don’t wind down for bed until super late, unless of course I partied a bit too hard. So was the case for New Years Eve…

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Fortunately I thought to take my shows off so no one could sharpie my face

When the weather has been nice outside, we’ve been going up to Madison Center to play some hoops. Dad’s getting his game back after picking back up at Gonzaga College High School’s evening pick-up league. Since joining, Dad’s already gotten hurt and had to take a couple weeks off.

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While basketball is fun, soccer may end up being my sport because I love to run around. Speaking of sports…Skins laid an egg in the final game of the season. While they probably wouldn’t have made it far in the playoffs, those are games that they have to win. Not sure where I am on Kirk Cousins…while he puts up numbers, he can’t seem to win important games and throws untimely picks. Reminds me a lot of Tony Romo. Captain Kirk is probably a top 13 QB in the league but shouldn’t expect to be paid like your active Hall-of-Famer’s (Brady, Rodgers, Roethlisberger, Brees) and I’m not sure he’s in the same class as Wilson, Newton, Ryan). And there are probably several others I’d rather have – Stafford, Winston, Carr and others who’ve proven themselves such as Flacco and Manning. I hope he realizes that when negotiating and doesn’t strap the Skins who need to improve a lot.

Per usual, the Capitals are off to a good start…hopefully they can muster up a deep run at Lord Stanley’s Cup. Congrats to Alzner on consecutive game 500.

Sleeping in my Bed

The other change to the new year is to get me sleeping in my own bed by myself. It usually starts with Mom (mostly) or Dad (he’s too big to share the twin with) sleeping with me and then sneaking out back to their room. I still wake up in the middle of the night demanding my diaper be changed and I be made a bottle. I’m also looking to conquer potty training this year.

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Big Thanks to Bama and Pop

Thanks for taking such good care of me guys. I love you.

 

Merry Christmas & Happy New Year

Ugh, Spoke too Soon

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Breathing in some fresh air on the front stoop

Too Soon

Put those celebratory beers away for a job well done Mom and Dad (just kidding, you can still have one). Apparently I spoke too soon with respect to all things being well on the health front. That’s the thing about cystic fibrosis which many people without knowledge of the disease fail to understand – to the naked eye, I look healthy and as though I’m doing really well, when in reality that’s partly true at best. The truth is that things are never truly 100% fine and I’ll never be 100% healthy. In this case, the doctors who “put eyes” on me said, I look great and were happy with what they saw…

Then my lab work, x-ray, and throat culture results came in after I left Children’s National. Dr. Shukla called Mom late one night while Dad wrapped up my nightly Chest Physiotherapy (CPT). My x-ray didn’t look great, my blood work showed elevated white blood cell counts, and my culture started to show staph infection in my lungs.

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Chest X-Ray

Visibly upset, Dad and I knew something was wrong. Mom became quiet, listening to Dr. Shukla closely for the next twenty minutes as he shared the diagnosis and plan. It was back on antibiotics (XXXXX) and extra CPT until I kick this infection. When taking my antibiotics, I demonstrate my super-human strength by closing my mouth, wrestling away from Dad’s grips, and spitting any antibiotic that squirts into my mouth back onto Mom and Dad’s faces. It’s quite the scene. I wonder what people would think if they saw this going down.

The Difficult Balance

Mom and Dad do a great job of keeping a clean house (weekly vacuuming, wiping down of surfaces, etc.), but when infection, sickness, or anything rears its head, Mom goes into overdrive on the cleaning and throwing anything potentially contaminated out. While Dad likes a tidy home, Mama in overdrive can be a bit overbearing/overwhelming to say the least. Dad told her it was crazy to throw everything out and replace with new, so she consulted with Dr. Shukla to ask if she was crazy. The verdict, mom is cray cray and she does not need to throw out my toothbrush each day for fear of recontamination. In all seriousness, this paranoia is not at all uncommon for parents and caregivers of those with cystic fibrosis. They want the best for us. Dad forgives you Mom, but we need to come up with a good nickname for when you kick it into overdrive.

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Scott’s Run Nature Preserve 

Recently Mom pleaded with Dad how everything – dust, dirt, germs, crowds – scares her and that she’s terrified to travel south to Dad’s family’s farm for my great grandmother’s 95th birthday party this upcoming weekend given all the rain. This is totally understandably given that Mom is a first time parent, a parent of child with CF (any disease for that matter), I have my first lung infection, etc. While Dad totally understands where Mom is coming from, he also wants me to have experiences that can’t be had in the small confines of Arlington. While Arlington is our safe haven, I bet there isn’t a cow, horse, combine, pumpkin patch, or anything like that in the entire county for me to get excited about. I know there aren’t dirt roads or ponds filled with large mouth bass, sunfish, and crappies. There is the Potomac River, but that can’t match the beauty of the James River.

All I’m really trying to say is that I get both Mom and Dad’s sides feel bad for the often stressful situation it places on them. Mom and Dad both have my safety and health as their top priority, but I think Dad errs on the side of living. That or either he misses his family far more than he’s willing to ever admit. It could also be the fact that living also allows for the guard to be let down some – not entirely because he’s still quick to swoop in and rip me off the kitchen table when I climb up there or pick me up when I fall, but there’s sort of a sense of safety for him at home.

Vest

The timing couldn’t have been better for my vest to arrive as I’m on double therapy duty until I’ve kicked the infection. By far the most expensive item in our house ($15,000), the jury is still out on when we can call the vest a good thing. Initially, it should come as no surprise that the vest is traumatic for me, my parents, and my little cousin Hayden. In a brilliant acting job, Hayden came over to wear my vest and show me that it’s not that bad/scary, but after leaving she communicated to Aunt Rachel that it just didn’t seem fair that I have to wear it all the time. While it will free Mom and Dad up from having to do manual CPT so they can do things like get dinner ready, do laundry, what-have-you, it seems so “permanent” in way. Using this vest will become so entrenched in my daily routine that it will eventually become second nature, but right not it’s just difficult to process despite the advantages it brings. I’m already crying less and less with each time I use the vest.

 

Late Gift & a Few Thanks

I have to thank Uncle P for the awesome tractor. The pedal is a bit tough to reach but the trailer is awesome and I love throwing all my trucks in there. I’ll do my best not to flip it on the hilly terrain like I did with the ATV Bama gave me when I was less than a year old. Haha.

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John Deere Tractor

 

#HTTR

 

Thanks Aunt Rae Rae for watching after me some while Bama and Pop were on their trips to New England and Charlottesville, VA.

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Me and Aunt Rae Rae

Also, huge thanks to the Gummeys for hooking me up with some solid threads. I received a lot of compliments on this sweater with the crab.

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Good weekend for fans of the DMV. Both the Nationals and Orioles made the playoffs and the Washington Redskins evened up their record to 2-2 on the season. O’s will travel to Toronto for the wild card (winner to play Texas Rangers) and Nationals host the LA Dodgers. Baltimore Ravens lost today, but don’t really count since the Orioles were the only baseball team in the area for so many years and DC has always had a football team.

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Ugh, Spoke too Soon

Seal Training, Construction, Summer Concerts, a Checkup, and PSA

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Pop & Bama (TMZ) posing prior to our morning walk

Seal Training

I know what you’re thinking – What could Jack know or want to talk about as it relates to Navy Seal training but the answer is easy really. Mom and Dad operate on two, three hour naps each night if they’re lucky. Mom and Dad really want me to sleep through the night, but I put up a good fight. I wake up at least once, sometimes twice requesting a bottle. I go to sleep late usually 2000 and usually am up by 0700 everyday. And because I love them so much, I beg to sleep in their bed so I spend a lot of the night in combat-mode, kicking and hitting them.

When I’m not pushing Mom and Dad to the limits with sleep deprivation, I host Nerf gun fights at the house. I’m beginning to get really good too. While I cannot cock the guns on my own, I can load them and shoot them without the help of anyone. It got to the point where Dad purchased some goofy chemistry goggles to wear around the house and avoid being shot in the eye. The other day when Aunt Rachel came over I stormed the entryway as she came in the door and shot her!

Here’s a short flick of me with two guns blazing.

And here’s the end of a long shoot out with Dad. I’m sure you could guess, but it wasn’t a pretty ending for Dad. He wasted ammo early and all that he could do was sit there.

Construction

I love construction. I love watching cranes, skids, dump trucks and backhoes redevelop Arlington on the regular. Seriously, there’s no shortage in Arlington of heavy equipment.

Home Depot Runs

Speaking of construction, I’ve been making the runs with Dad to Home Depot lately. Mom likes to call him “Wreck-it-Ralph”, but I think he’s done a good job and addressing things at the house. Dad installed the new thermostat, patched the wall, finished his workbench (sans the clear coat). Said he’s going to build me a little table and chairs next weekend.

Riding the carts in Home Depot is fun. It was funny when Mom and I left Dad to pick out lumber, one employee out of fifty that thought it was cute told Mom I shouldn’t be on there. That’s when she responded with “I grew up riding these things”. For those of you that don’t know my Mom – her Dad (Pop) built the addition on their house and they were regulars at the Home Depot as well. While I don’t think Dad will take on an addition by himself, he’s certainly actively tinkering and heading out to Seven Corners Home Depot.

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Outdoor Concerts

Not sure I want to blow up my dive spot or not, but ^&%$ it…I’ll let you in on an awesome little secret in Arlington. It might be one of the best kept secrets (when the bands are good anyway). Potomac Overlook Regional Park, in the Donaldson Run area of Arlington, has summer concerts on Saturday nights (7-9PM) back in this wooded area that is powered by Solar Energy. It’s a very chill scene for sure. They ask for modest $5 donations which help to keep the concert series going. Last week’s band, Houk and Robinson Duo was solid and I expect another good one this weekend as well. Maybe I’ll see you there and we can all go dancing together. My cousins  (all single and gorgeous) are sure to join me in the fun.

Sliding Annual Checkup

I know what you’re thinking…Jack is only 19 months, why is it an “annual checkup”. Truth be told – between the NICU stay and slowly getting going on my own, my checkup schedule is a bit off. That said, the plan is to continue getting “annual” checkups pushed back slightly until they become truly on my birthday in February timeframe. While today’s news was great, I sure as hell didn’t like being there.

First they made me strip down to my diaper to weigh in, then they had to do chest x-rays, and last was a pretty intensive blood draw. Because we’ve signed me up for some research assignment, they needed extra blood for one of the labs. Surprisingly, the first nurse got a vein on the first go, but I’m so strong that I broke out of Mom’s grips and blood squirted everywhere. Not going to lie, I cried a little bit, so they sent in a team of doctors. One girl was sent in to blow bubbles and play shows on the iPad. Such a sweetie.

But like I said, the doctors were happy with what they saw and think that Mom and Dad are doing a really great job.

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Cheers

And when I’m not busy with Navy Seal training, playing hoops, dancing to live music, participating in construction, I enjoy helping Dad pick out some new beers to try. Westover Market in Arlington has a great selection. Dad would probably be embarrassed to say how often we swing through here on the way home from Bama and Pop’s.

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Public Service Announcement

Don’t forget to get your flu shots! The time is fast approaching for anyone in my inner circle or that I come in close contact with to get their flu shots. Last year’s shots were highly successful so don’t skimp out. My health depends on it.

Lastly, a Special Thanks

So late last week, Dad and I came home to a surprise resting between the storm door and our main door. It was a small bag, containing a incredibly generous gift along with a very thoughtful note, but no name was left behind so we don’t know who to thank, So whoever left behind the surprise, I hope you read this blog and know that the three of us cannot thank you enough. We hope you will come forward as well so we can truly thank you in person.

Time to wrap this up, I have some grocery shopping to do before the Nats game tonight. Trea Turner has been super impressive. Hope he’s the spark to get the Nationals to the World Series. Next week I’ll show you how I challenge Turner for fasted guy in the DMV.

Seal Training, Construction, Summer Concerts, a Checkup, and PSA

Easter Edition

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Mom and Dad’s version of indoor furniture for the new house. Haha

Wow, it’s been nearly a month since I last posted. Overall things have appear to be going well at the moment and my latest medical incident – c diff appears to have been resolved through a heavy and extended dose of antibiotics. That aside, I’ll try to recap all the fun in chronological order since c diff.

March 6 – Baptism

The Riley clan was able to schedule a private baptism for me at Holy Trinity. In all seriousness, the event couldn’t have been any smoother.

I couldn’t had more free space to roam. I even garnered a good chuckle from the priest.

Spring Training

Hanging out with Pop is always a fun time. He’s super patient, but I don’t know what got into him this past week. He and I ran around on the base paths outside of Madison Manor park. Guess the warmer weather has him thinking about Bryce Harper and the Washington Nationals.

 

Enjoying the Fort Ethan Allen Park

Mom and I checked out the park nearest our new house and its small, but pretty cool for me. I enjoy playing on the slides and running through the tunneled areas.

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And here are a few additional favorite photos from Mom’s iPhone

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Make Waves

Walking around Pop’s house.

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Taking over my cousin’s playhouse
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Officer, I swear I only had one or two drinks

Weekend Hike & Easter

Uncle Seamus came into town for Easter weekend so we opted for a quick hike. Our new house is pretty great in terms of location. It’s literally a 15 minute walk from our house down to the Potomac River along a nature trail. There were many fisherman getting lines wet in hopes to catch American shad which are running through there this time of year.

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Put me down Dad, I got it from here.

Cousin Love

Lastly, I have to mention how proud I am of my super generous cousin Hayden. A popular thing for teachers do is celebrate 100 days of school with some sort of activity. Hayden, who is in Kindergarten at Nottingham Elementary, was asked by the teacher to write down what she would do if she were given $100. Her response…

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It says, “I would give to the CF people. CF is a disease that can make you sick.” According to her teacher, Hayden was the only student who opted to give her money to others. All other students wrote that they would buy themselves video games and other various toys. I can’t say I blame them…especially at that age. All I can say is that I have a really special cousin in Hayden.

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Beautiful & Generous Cousin (Summer 2015)

Can’t wait to spend the summer together again.

Easter Edition