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

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.

This slideshow requires JavaScript.

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.

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.

Pink for girls

Tape & Paint

Reveal

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.

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.

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

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.

October 2017

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.

Dig the dirt

Make a big pile

Dig the dirt

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.

Splashing in the water

Climbing on the pipe

Supervising the night shift crew

C’mon Run

Love this place

Freeze

I got mom’s hat!

Smell that salty air

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.

No pants party

I need your help

I can do this

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.

Little fish

Sharks

Like a club up in here

Surprise

Look! Alligator.

As you walk into Manteo Aquarium

Great time. Highly recommend

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.

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.

I’ll have a pint of

Oh wait, truck show

Currituck Beach Lighthouse

Can’t score on me Mom

That’s my ball

Dribble, dribble, score

Upper 90′

Putting the moves on Mom

Slam on the breaks and they’ll fly right by

Yellow lollipop is yummy

View from atop is amazing. Pretty cool shirt Dad.

Bodie Island Lighthouse

My ball

Love you Mom

Shoots

Look Mom You see?

Going D-1, that’s right

Upper 90′

Hatteras Island Lighthouse & National Seashore

Kick

Goooooal

So much fun

Boy and his trucks

Too short 😦

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!

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+.

CF Routes 20/40/65+ miles

Dad’s Route – appears to have missed that small, bottom loop

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…

Take a bath you filthy animals!

Giving Thanks & We’re On The Move!

Watching People Play Basketball in the Park

Health Update

Knock on wood…since the scare from a few weeks ago…things appear to be good. I have two teeth fully showing on bottom and another four coming in on top. Dad says I’m going to look like Michael Strahan with this gap unless they come together some.

I’m also a crawling machine and testing the waters with walking. My longest distance to date is probably 15 unassisted steps as move from room to room in the Rosslyn condo. Mostly I use one hand to balance on the coffee table or someone who walks me by one hand around the house. I love it when people hold my hand(s) and walk me around the house. Sometimes, I try to be funny and outrun them – haha.

Fetch me my towel peasant 

Giving Thanks

Sort late to post, but better late than never and no one is more deserving than “Team Jack”. Thanks to everyone who is a member of Team Jack. Team Jack is everyone from friends and family of me and my parents and the medical staff at Children’s National who keep me upright.

As I mentioned in my last post, my team at Children’s was able eliminate the need for surgery and they have been closely monitoring me since I last got out. How weird is this…they like seeing pictures of my poop! Maybe “like” is a stretch, but if Mom and Dad are worried, they just snap a photo (thank you Smart Phones) and email it to my team describing it’s hardness and how hard I might have strained to produce the stool.

Thanks to family. Everyone from Pop and Rachel who look after me most days while Mom and Dad work, to my grandmothers, grandfathers, aunts, and uncles who spoil me with toys and clothes and also look after me. Also, big thanks to my cousins who are always putting me first in their thoughts and prayers. Check out this letter to Santa form my eldest cousin Riley.

Cousin Riley’s Letter to Santa (2015)

Most of all, thanks to Mom and Dad for helping me never miss a therapy. Mom typically knocks out the mornings and Dad the evenings. They make sure I have all the medicine I need and try their hardest to get me to eat/drink stuff other than formula. Speaking of their hard work…

On the Move

Mom and Dad closed on a house Friday, Dec. 4. It has good bones but is what Chip and Joanna Gaines would describe as a “Fixer-Upper”.  We have a lot of work ahead of us which Dad is sort of excited about, but leaves Mom feeling very overwhelmed. Dad has asbestos abatement, painting, and flooring all scheduled in the weeks before Christmas and are still on the hunt for a good electrician to do a few things prior to moving in fully. Should be fully in the new place by the new Year.

On the Stoop at Our New House

Happy Holidays!

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

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.

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

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

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 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

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

• 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

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 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.

9 Month Checkup, Halloween, PSA, and Maybe a New House

Urban Hunting

Nine Month Checkup – My nine month checkup at Children’s National went well this past Wednesday. Doctors say everything looked good. My weight remains in the 50th percentile and my lungs sound good. The doctors were really pleased with my happy demeanor. My next follow-up is scheduled for January (after the new year).

Dr. Shukla listening to my lungs

Halloween – For my first Halloween, I spent where probably anyone could have guessed – TMZ’s house in Madison Manor. Pop has been building a fire in the park for the last 30+ years. Unfortunately for cystic fibrosis sufferers, its not advisable for me to hang out around a bon fire…let alone one that reaches 30 feet tall so I hung out on the back deck and watched from a distance. For anyone curious…the fire lights up at/around 6:30 PM each Halloween.

Madison Manor Bon Fire

And just because I wore a obligatory super hero costume, it didn’t mean I got to skip out on my Chest Physiotherapy (CPT). Even Superman has to knock out his Chest PT.

Super Chest PT

Public Service Announcement – While you may think I don’t know what I’m talking about, my team of doctors insist that anyone who’s hanging out with me get their flu shots. It is so important that my friends and family all get their flu shots because if you get the flu and then spread it to me…that is no good (chance I have to be hospitalized)! Believe it or not, it is actually quite cool to get your flu shot. Check out my cousins! 🙂 #NoTears

Cousins Getting Their Flu Shots

New House – So in an effort to move out of the ever, shrinking Rosslyn condo which poses environmental health hazards (carpeted floors, smokers, etc), mom and dad finally had an offer accepted on a house. While this is great, the home inspector has mom and dad a bit worried as there is a decent likelihood of asbestos in the basement. While asbestos are not good for anyone, it’s probably worst for someone with Cystic Fibrosis, so mom and dad are assessing the situation to see if we should move forward or pull out of their offer.

NFL – Oh yeah, almost forgot. 9:00 AM games are cool, but live streaming from the Internet…not so much.

What happened to Baby Einstein? Who are the Bills and why does Berman say no one circles the wagons like the Buffalo Bills?

Since everyone out there thinks I’m happy all the time, I thought I’d leave you with this gem.

I’m not always happy

September 29 – Coach Pike Tribute

---

Coach Pike

August 25, 1964 – September 25, 2015

---

Surry County High School Cougars Baseball – 2001; Coach Jimmy Pike (far right)

On Tuesday Sept 29, Dad drove down to Wakefield, VA to pay respect to another high school coach of his who passed away far too early. This time it was his baseball coach, Coach Pike whom I’d never had the chance to meet. Both Dad’s high school basketball and baseball coaches have fallen to cancer at age 51 and once again this funeral was a reminder of how many lives teachers and coaches touch – especially in a small community. The funeral was full of current and former students and players of Coach Pike.

You might be thinking…what does this have to do with me. Why is Jack talking about this? Here’s why! Rev Ray Rowland led the services and shared several stories and referenced some Coach Pike’s favorite sayings and inspirations he lived by – most notably was inspiration passed along from another coach who went by the name of Jimmy and his famous ESPN ESPY’s speech, where he said to Don’t Give Up, Don’t Ever Give Up. If you’ve never seen it, do yourself a favor and watch one of the greatest speeches of all time.

Most of Dad’s time with Coach Pike was spent prior to his battle with cancer therefore he never knew of the inspiration he gained in the Jimmy V speech, nor that Coach Pike did not want to be defined by cancer. It’s interesting because as Mom and Dad read from other parents of children with CF (thanks to blogs such as this)…they constantly have that stigma that they fight – so as to not let CF define their child. I guess it’s not surprising that CF and cancer are very similar in that respect, but interesting nonetheless.

Dad also says he’ll always remember that Coach Pike expected the best from all of his players and always had a special way of motivating his players. Those are certainly the type of things passed along from a coach to a player to a son. With CF, I always have to try my hardest and give my best. On the days I won’t feel my best; Dad (and Mom) will be there to motivate me. Perhaps Coach Pike presented Dad with a Coach’s Award his senior year, knowing that these life lessons would have a greater purpose.

Seeing as the Nationals and Orioles are out of the playoffs, I guess we can root for your Texas Rangers.

Quick Memorial Day Weekend Update

The holiday weekend started off with a bit of a letdown for Mom and Dad, as they lost their bid on a fixer-upper. home in Arlington. Mom and Dad bid on a house they wanted to move into and lost out to a developer who is planning to tear it down an build a McMansion. With all the focus on purchasing a home, being busy at work, and Dad hobbling around in a walking boot, Mom an Dad forgot to get my new Creon prescription refill so a Nurse from Children’s dropped off some to hold me over until my order could be filled. Hopefully this coming week is a little less hectic and has some good home inventory hit the market.

Happy to see a Creon “Drop” at House

Let’s not forget why we get Monday off as a holiday. We should all be thankful and remember those who died while serving in America’s Armed Forces. Those men and women gave the ultimate sacrifice.

I am also so, so, so thankful for my cousins. Today, they set up a lemonade stand on the Washington and Old Dominion (W&OD) bike trail and raised money for Cystic Fibrosis (CF).

Lemonade Stand for CF

After about two hours, my cousins raised about $37, in which their father said he would match every dollar so that brings their grand total of Cystic Fibrosis Fundraising for today to $74. Thank you Riley, Paige, and Hayden for the hard work and raising money for such a worthy cause.

Who Could Say No to This Girl?

Let’s hope Dad recovers quickly from his Grade II calf tear because he’s boring when he can’t take me on afternoon and weekend walks. It also requires Mom to do more of the care-taking.

Me, Dad, and TMZ

Tomorrow is my first doctor’s appointment in over two weeks so it will be interesting to see how much weight I’ve gained and see what they think of my progress.

National CF Month and 3 Months Old

I turned three months old this week and have been out of the the NICU now for 49 days (counting today). My friends at Children’s NICU would tell you I’m 92 days old today. That’s nearly one day for every year my one great grandmother that I saw a couple weeks ago is old.

It was a big sports weekend and my parents and I watched them all (derby, fight, playoffs) but the highlight was definitely the Capitals Game 1 win against the NY Rangers Thursday night. Ovi had a nice goal Saturday, but it wasn’t enough to overcome the early NYR lead.

Jumping for Joy

On Friday night, I hung out with my grandmother while Mom and Dad went out to dinner with another couple from Arlington who has a child with Cystic Fibrosis (CF). Mom and Dad told me that they have a super cute daughter who is doing really well (thriving). Their daughter has a different mutation than I but should actually benefit form the Kalydeco drug I referenced in my last post when eligible to begin using it (have to be older). During dinner, both sets of parents explained the treatment plans in place for their children and “compared notes.” Mom and Dad left dinner with a wealth of questions they plan to email their team of doctors to ensure I’m getting the best treatment options available. Their daughter is on Levalbuterol and Pulmozyme (AKA Dornase Alfa). They also tuned Mom and Dad onto a new nebulizer which was recently approved by the FDA, ERapid Nebulizer, which is designed to cut down the nebulizer time. So if you’re a reader or stumbled across this blog and have any other thoughts on CF Treatments, please feel free to reach out or leave me a note in the comments section.

“Only a CF parent would know!”

While the conversation between parents came easy and natural, all four chuckled when discussing what its like having Creon granules randomly stick to their feet after countless nights of preparing Creon-applesauce mixtures in the middle of the night while they’re dead tired. Perhaps when I’m done here, I’ll encourage Dad to look for a list for “things only a CF parent would understand” and so he can keep up the laughs.

Reading a book

Above is a picture of me reading a book sent to me from Dad’s pre-school teacher. Here’s me and Dad saying Thanks Ms. Ward.

Lastly, I’d be silly not to mention what May is. Yes, May is the famous for Memorial Day Weekend AKA “MDW” AKA the start to summer, but the month of May for me will always be known as the National Cystic Fibrosis Awareness Month.

Here’s a link to TMZ’s Great Strides page where she’s walking to raise awareness in Reston, VA. You can also click on the icon below to head directly there.

Click here to see TMZ’s Page in Support of Me

As this is National CF Awareness Month, many of Mom and Dad’s friends and family ask what can they do to help or when are Mom and Dad going to do something/host an event. Mom and Dad know how awesome all of their friends and family are and would like to tell you that they are working on something. It’s just been a whirlwind of being first-time parents, coupled with the fact that I sent them through the ringer those first 42 days in NICU, but they are working on doing something in the future and will let you all know as details emerge. That being said, feel free to offer up any suggestions/tips in the comments section below or reach out to Dad directly for information on non-profits, establishing a foundation, good ideas for an event, etc. Mom an Dad are all ears at this point, but express desire to conduct something annually, that’s everlasting, and raises money for a cure. Thank you all so much!

Tuesday, April 28, 2015 – Gaining Weight

Aunt Rachel went with Mom and me to yesterday’s pulmonary appointment. It went well. I gained an average of 28 grams a day which brought me into the 25 percentile for weight. Many have asked me if thats of all children or based on CF children…I think its all children. That’s far better than the 10 percentile I found myself in while there for my last visit on 15 April. The doctors stressed several important things to my mom and aunt while there for the appointment:

• Chest Physiotherapy (CPT) is so, so, so important. It’s okay to miss one from time-to-time if I’m being so stubborn and crying uncontrollably, but my parents should perform CPT no matter how fussy I get as it is in my best interest. Contrary to what my parents thought, Dr. Shukla also believes that back lobes are more important that front lobes when doing so as well. Mom and Dad are happy to hear that as it’s harder for me to fight them when I’m lying on my stomach.
• Save money! Probably goes without saying as this is good financial advice for anyone, but Cystic Fibrosis (CF) drugs are expensive. As these drugs are developed by companies such as Vertex Pharmaceuticals, Inc, they need to try to recoup the costs incurred during the research and development (R&D). A combination of the long clinical trials, tight restrictions of FDA, and that there are so few patients¹ who would stand to benefit from the drugs, that the costs are usually astronomical. Kalydeco, probably the most promising drug on the market for CF sufferers that you’ll hear about, is not found to help people such as me at this time unfortunately, but it costs about $300,000 a year!
• Keep a positive outlook. Don’t think of my 50% chance of living to age 40. Mom and Dad should try to make me smile each and everyday I’m here. Mom and Dad should exhaust whatever means possible to give me the best opportunities in life and afford me amazing life experiences.

Teddy Roosevelt Island Visit

---

After my doctor’s appointment, Mom took me to hang out with a childhood friend of hers, Erin Reed who recently had a child of her own, Samuel Douglas. Mom and Erin grew up and went to school together.

Me and Samuel (Brian Douglas and Erin Reed’s son)

---

On Sunday, I spent my first of what will likely be many weekends at Glover Park (NW Washington DC) as Dad plays on a team, Gary’s Old Town Tavern, in the 30+ year old league known as Glover Park Coed Softball League (GPSCL). Dad’s team improved to 2-1 with a nice victory over Larry’s Kids.

---

Should drug companies have an obligation to put patient well-being on equal ground of profitability? That’s a tough question to answer, but its something that will certainly dictate how far we advance in medicine as a society and how available drugs like these will be to people like me or more importantly, the middle class, who make enough to pay their own bills, yet not qualify for Medacaid and other various programs for less fortunate or the alternative which includes those who can self insure/afford these costly medications (i.e. Gates, Zuckerburg, etc) without help . Guess only time will tell.

---

1 – few patients – when you consider that these companies are for-profit businesses that must make sound business decisions, one might wonder why anyone would spend hundreds of millions of dollars to develop a drug which might only minimally improve lung function for 10% of 70,000 sufferers worldwide and fight against insurance companies to justify its benefits to patients so that it can be more widely adopted. Kalydeco is only found to work for about 2,000 people in the world today, but that could change and they have new drugs in line for FDA approval based in part to their previous R&D and successes found with Kalydeco. From a business sense, it’s probably more profitable to develop and market drugs for larger populations of sufferers as is the case with Sovaldi which helps the 3 million Hepatitis C sufferers. One pill of Sovaldi currently costs $1,000 and a full regimen $84,000. That would cost $300 billion to help all sufferers which is currently what all taxpayers pay for all combined prescriptions. Thank goodness that not all people think that way and there are companies out there working toward solutions for people such as me. I’m not sure what the future of medicine holds and how it will all affect me, but I can only hope that some of these amazing companies continue to develop drugs which help sufferers of Cystic Fibrosis and my mutation.

Thursday (April 23, 2015) Update

This week’s post highlights updates to my meds and a visit to some family on Dad’s side down south. Once again, sorry for the lag time between posts. @ Medicine – I took Zenpep from Wednesday (6:00 PM) to Monday morning (5:45 AM), but switched back to Creon because I seemed to be spitting up and vomiting more than before while on Zenpep. I also had an increased number of stools. I took my first Prevacid tablet Sunday since Walgreens shut down their pharmacy for no known reason and I wasn’t able to get it on Saturday evening as I had hoped. Hopefully the Prevacid and the switch back to Creon works well and I begin to feel better. So far, I’m cautiously optimistic that this change is favorable, seeing as I’ve had up-and-down days when changes previously occurred with my meds. Below is my new monthly prescription of Creon (enzyme medicine). The chapstick, quarter, and “average” pill bottle were to help show scale, but I don’t think they even do it justice. In addition to the 2.5 Creon pills with every feed, I take 1 Prevacid solutab daily. I still do Albuterol once daily, take AquADEK vitamins once daily, and do my chest physiotherapy twice daily.

Current 30 Day Supply of Enzyme Meds (600 pills)

@ Family – On Saturday (04/18) I took a trip down south to see one of my great grandmothers. My dad’s Grandma is 92 years old and doing well. She loves quilting, playing cards, reading the bible, and spending time with her family. While there I also saw a Great Uncle and two Great Aunts. All of them were so excited to see me, but especially my super sweet great Grandma. My aunts and uncle said they haven’t seen her smile so much in a long time. Glad I could bring some happiness her way. I’m the first Peden boy to be born twenty five years, making Dad’s youngest brother Jacob, no longer the baby boy to carry the family name. I’m really looking forward to another trip down south to see her and the rest of the Dad’s family.

Great Grandma Peden

@ My Fussy Side – And since everyone thinks I’m so happy all the time and nothing looks wrong with me, I thought I’d mix it up a bit this week and let you see my other side. It’s so funny because TMZ is always so excited to see me, but when I start crying, she’s like Peyton Manning yelling “Omaha” and performing a checkdown, handoff to someone within 40 second play clock. It’s sort of funny when you think about it. Anyway, here’s a few of photos of me not having the best of times. Those of you pictured with me should not be offended. It’s not you, it’s me.

Screaming during Chest PT with Dad

Here I am on Sunday at Bama’s. This is usually par for the course.

Bama, I want my parents.

Here’s about the only time during my trip down South, where I wasn’t in a good mood. I slept the whole way there and back in the car and was pretty playful while there.

Put me Down!

And lastly, here I am…going “postal”. Just kidding. Dad needed to get some stamps so Mom can mail off some long overdue Thank You cards. For those of you have been so generous and so thoughtful, Mom and Dad know they owe so much to you all and they are just waiting for a little downtime so they can sit down to write the remainder of the Thank You’s.

Going Postal

My next pulmonary checkup is on Tuesday, April 28, so stay tuned for updates following that and whatever fun I get into this upcoming weekend.