May is Cystic Fibrosis Awareness Month

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!!!

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

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 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.


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).


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

May is Cystic Fibrosis Awareness Month

Merry Christmas & Happy New Year

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.


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.

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


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.

This slideshow requires JavaScript.


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…

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.


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.

This slideshow requires JavaScript.

Big Thanks to Bama and Pop

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


Merry Christmas & Happy New Year

Mama Can’t Handle the Truth


Mama Can’t Handle the Truth

While Mom and Dad can’t complain (they don’t have CF), they do get a short end of the stick from time-to-time as they have to help with my therapies regardless if they feel like it or not and are probably more likely to get sick as they’re constantly around me. We all know that I’m more prone to getting sick so it only makes sense that their exposure is increased. While we don’t know for sure if Mom caught whatever it was that I had, Mom caught something viral and was wiped out. That meant Dad had to step up and handle all the therapies for those couple of days. So while Mom did her best to keep her distance, it wasn’t easy on her and gave way for me to start saying “Da-da” more than ever before. That led to text exchanges such as this…


It also led to me and Dad becoming tighter than ever before. I’m sure many of you reading are probably thinking…”how could they be any tighter,” but there’s always room for improvement with anything in life. Dad and I took to Mega Blok’s – building some pretty impressive towers. Dad would even build towers for me overnight to wake up to and see in my playroom! We watched movies and even went on some lengthy bike rides.

Instagram – Str8 Flexin’

Something super weird happened recently during this stretch as well. Mom got her first taste of social media and launched her first ever account – Instagram. Now Mama is on the gram all day every day. Dad never thought something could replace her love affair with Daily Mail, but Instagram might just be the one. Mom is always angling for more followers, so I’ll give her a shameless plug on my blog @bridgetpeden.

DC Sports

Overheard Dad telling some friends that he’s not sure he wants me to grow up as a fan of DC sports after the constant letdowns he’s suffered. I keep telling Dad that at some point that has to change and maybe I’ll be coming up at the right time – like those lucky fans of Boston sports when Patriots, Red Sox, Bruins, and Celtics were all hanging banners. The NLDS defeat to the LA Dodgers was just the latest blow.

First Job Offer

Received my first job offer last week. That heavy interest in construction and hanging around construction projects led to a PM on one of the sites to come up to me and Pop and offer me a job.


Cox Farms & Claude Moore Colonial Farms

Mom and Dad felt obligated to do the pumpkin patch thing so tried Cox Farms in Centerville, VA which everyone raves about. The place has some spectacular reviews, but it scared the living heck out of Mom and Dad because they went on Columbus Day and the place was packed. They didn’t even really have a patch so much as a pen in which they herd all the patrons through and you can grab pumpkins on your way out of the amusement park. They even charge $17/person. After shelling out $34 and leaving after about 20 mins, Aunt Rachel suggested…

Claude Moore Farms which had an $8 admission and charged $1 for a six ounce cup of water and $2 for some terrible sausage sandwich. It was cool to see many of the animals (cows, chickens, ducks, etc.) but there was a lot of wood being burned throughout the exhibits like in the old days so Mom and Dad were a bit hesitant to let me roam around too freely for fear of me breathing in too much smoke so Dad had an even better idea for some outdoor fun…

Country Roads, Take Me Home…

We headed south this past weekend to Dad’s hometown in Surry. Naturally, we did obligatory Pumpkin Patch photos but I never make it easy on Dad as a subject because I prefer to run around and throw pumpkins rather than sit there like a doll. That said, here are a few of the better photos Dad was able to snag of me while at the patch and at the family farm. College Run Farms, located in Surry is free and had thousands of pumpkins to choose from. They even had pumpkin ice cream.

Born to Run

While the above represents how I behaved as a photographic subject for 90% of the shots, Dad was able to snag a few of me sitting.

Then there wast that time I found a yellow pumpkin. Did you know there were yellow pumpkins?

This slideshow requires JavaScript.


Mom dressed me up as a circus strong man. I might of worn this costume for all of four minutes…same length of time in which I can hold my iron cross on the rings.

Words and Favorite Things

I’m probably leaving out a ton of things I say or have said to date.

  • Truck­ – by far the most utilized word in my vocabulary that isn’t “dada” or “mama”. I love trucks – all trucks. I have lots of books with trucks and lots of toy trucks. One of my favorite things to do is watch the big construction trucks fly up and down John Marshall as they continue to fix the water pipes.
  • Cheese – this is an easy one and I say it when someone holds up string cheese and sometimes repeat it when smiling for the camera. My favorite string cheese is Horizon, which irks Dad since it’s double the cost for half as much product as its competitors.
  • Teeth – my dental hygiene game is on point. I love brushing my teeth every morning and night. I even try my hand at floss.
  • Up – when wanting to be picked up, placed in high chair, etc.
  • Sit – when i want you to sit down next to me.
  • Book – not a clear “book” but pretty close and everyone knows what I mean when saying it.
  • Ball – referencing the 100 + balls that I leave scattered throughout the house
  • Hi and Bye – classic salutations
  • Baba – when I want a bottle (of milk nixed with Pediasure)
  • Wawa – when I want water
  • Work – when I wake up and look for Dad but he’s not there in bed Monday – Friday

As of this week, I’ve even begun counting 1, 2, 3.


Not sure what the month of November holds, but I’m sure it will be more fun.

Aiming to stay ahead of Mom and her Instagram posts. She steals me and Dad’s photos and pawns them off as her own.  wonder where she gets that from…TMZ perhaps?

Mama Can’t Handle the Truth

Ugh, Spoke too Soon

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.

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.

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.


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.

John Deere Tractor




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

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.


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.



Ugh, Spoke too Soon

November 7-9 – Children’s National Visit for Bowel Obstruction

Lots of Pain
Lots of Pain

Perhaps some of you reading already have heard, but I thought it would be a good idea to give my parents a good scare this weekend by going to the ER and getting admitted into Children’s. Last time Mom and Dad were this scared, Tom Brady was winning his fourth Super Bowl and I was just born. This time, he was simply picking apart a terrible Washington Redskins team just a few days after turning 9 months old.

Little Pulmonary P.O.W.
Little Pulmonary P.O.W.

Symptoms and Lead-Up – So for the last week or two, I’ve been pretty fussy, hadn’t had a huge appetite, nor showcased tons of playful energy that I’d been demonstrating previously. To Team Jack’s credit, everyone thought this could have been because of teething and introduction to new solids, or the several immunizations and doctor’s checkups, but in reality…there was something more beneath the surface that only I knew.

It all started Saturday morning when I woke up (about 7:30 AM). I wasn’t really hungry, but Mom trying to pack on the needed calories opted to feed me yogurt when I turned down the bottle. I kept it down for about five minutes before I vomited.

Mom Reading to Me
Mom Reading to Me

Dr. Shukla responded to Mom’s “panic email” by suggesting I visit my pediatrician’s office for an observation. The on-call pediatrician prescribed an X-ray as a precautionary measure, but seeing as I’ve already received more than the average human does in a lifetime at the tender age of 9 months, Mom and Dad waited until after a quick cat nap and two ounces of milk which I again vomited before heading into Virginia Hospital for my X-ray (about 4:00 PM). After seeing what appeared to be a blockage, Mom and Dad disregarded doctors advice and drove straight to Children’s National, rather than staying at VA Hospital Emergency Room (ER) and waiting for a transport vehicle to come around. The drive there was terrifying for Mom and Dad since I vomited again all over Mom in the back seat while Dad weaved in and out of traffic. Have to give Dad some major props as I think it was a record trip time from Arlington to Children’s for us.

iPad Prison
iPad Prison

Children’s National ER – We arrived at the Children’s ER at 6:30 PM where we did our best to avoid germs. Because I have CF, I was given a ER room to wait in pretty quickly, but because we’re in DC, I had to wait until about 2:00 AM to move into my private pulmonary room and formally be checked in. Two children under the age of 14 were being treated for gun shot wounds in the ER. I overheard the cops in the hallway saying it was over a pair of shoes. #FirstWorldProblems.

2nd Abdominal X-Ray
2nd Abdominal X-Ray and Jason Pierre Paul-esque Glove to prevent me fro pulling out my IV

Within the next hour or so, I was able to produce my first stool in nearly 36 hours. While this was good, I was still in a lot of pain and have been for quite some time.

Sitting Up
Sitting Up

Lessons Learned – The doctors said we “did everything right”. With CF, we always want to be more overly cautious say the doctors. While the projectile vomiting was a trigger for Team Jack this time around, there were several “signs” we should consider to gain a better diagnosis.

So Kick Back and Learn a Few Things
So Kick Back and Learn a Few Things
  • Stools – throughout the course of the last few weeks, my stools were both hard and soft. It was likely that they softer stools were bypassing the “blockage” of hard stools, but occasionally there were more formed stools seen in my diapers. If this is the case, we need to up my stool softener which I will not begin to take as part of my daily routine. It’s okay to take pictures of my poops to share, but maybe give the recipient the heads up NSFL (not safe for lunch) in the Subject Header.
  • Change in Eating – as mentioned above, if I don’t seem to be as hungry or you notice me pushing away food consistently, begin taking note so that we can see if a trend is starting. Once in while is not a big deal, but continued denial of food or eating less and less is not a good sign and we may need to introduce more stool softener and let me drink more water to let things pass through more easily.
  • Sleep Pattern Change – man I was tired. I never sleep. I had been sleeping more “through the night” and Mom and Dad thought they were going to get to start sleeping. I had also been taking longer naps during the day at Pop’s. Next time I’m acting like this…it might be a sign that something is wrong. If you think I’m sleepy, begin taking note and let’s see if a trend is beginning to show itself.
  • Attitude/Behavior Change – prior to this week, I had been running around like a mad man by holding onto anything I could (e.g. coffee table, chair, walls, etc.) and shuffling around the room. I had also really gotten the hang of crawling, but since my stomach was upset, I immediately began to stop all of this. If you see a sudden change in my happy demeanor, take note and hopefully it passes. If things don’t improve, might be time be seen by a medical professional.
  • Distended Abdomen – while it may difficult to determine with these abs, if you think my abdomen feels hard or looks distended, keep an eye on it. A distended abdomen could mean that air is building in my bowels/intestines.
Glimpse of Former Self
Glimpse of Former Self

Overall, while this experience was scary for me and my parents, things seem to be good now and we all learned a lot. Let’s hoping I don’t find myself back in here until my next schedule appointment on January 6, 2016.

Can't Wait to Get Back Outside
Can’t Wait to Get Back On the Outside

Treatment – The staff was able to help clear my bowels through an extrenely heavy diet of MiraLAX and GoLytely. I was given an IV immediately while waiting in the ER due to low hydration and sugar levels. Luckily the ER nurse was able to get the IV on the first attempt. Overall pricks this visit was probably around 15-20. Also received 3 X-Rays and 2 NG tubes were inserted (one for suction and a later one for the GoLytely/MiraLAX).

Thanks – Thanks to Aunt Rachel who helped the lab tech find my vein for one final blood draw. As always, thanks to the fine staff once again for keeping me out of the Operating Room (OR). Thanks to my Pulmonary team who all came by to check on me and my parents when they heard I was admitted.

November 7-9 – Children’s National Visit for Bowel Obstruction