Three Year Appointment

Two Years Ago Today…

I was at Children’s National dealing with a bowel blockage that I’d later need surgery to resolve. Remember? We wondered if I would be out for Christmas. Fortunately for me (knock on wood), the surgery was successful and I have not had to go back to the hospital for any extended hospitalizations – just checkups!

IMG_3459

3 Year Appointment (Nov 29)

I’m not a fan of going to the doctor – then again, who is? On Nov 29, I had my third “annual” checkup as they continue to try to slide the date to close of that of my actual birthday. Annual checkups are even worst because I have to be there so much longer and do so many more tests that my normal, quarterly checkup. Mom and Dad reached out to my team of doctors well ahead of time to try and not spend so much time at the hospital during cold and flu season. The result was amazing – in and out in 3 hours!

7:00 AM – Mom and Dad woke me up. We did therapy – vest and albuterol nebulizer. They got me dressed and we hopped into DC rush hour traffic.

IMG_3326

8:00 AM – Arrive at Children’s National and head straight to X-ray. We were the first ones there. This was the most sad I was the entire day. Mom couldn’t come into the room with me because she’s pregnant with my baby sister. The whole X-ray part of the visit leaves me incredibly vulnerable because I have to take off my shirt and get strapped into this chair and the room is always really cold.

IMG_3328

8:45 AM – Glad that is over. I finish with X-ray and head to blood work. Usually the lab area is filled with tons of people (coughing, sneezing, etc.), but because its a weekday, super early in the AM. there might be 1-3 people around. This calms me and my parents nerves as we all feel as though I’m less likely to pick up something.

I was so tough during the blood draw. I didn’t even shed one tear. The phlebotomist was amazing. Rather than force a stick in my left arm, he took the extra two minutes to unstrap my left arm and examine the veins in my right. One stick, six vials or so later, I was all done. It probably didn’t hurt that Dad thought to give me an early Christmas gift – Dinotrux! That’s Ty that I’m playing with. He’s my favorite.

9:25 AM – Finish blood draws and head to cafeteria for quick breakfast before my scheduled pulmonary appointment. I continued playing with my new Dinotrux while Mom and Dad reminisced of the horrible cafeteria food that they’ve eaten for over 55 days while by my side.

10:00 AM – Meet with my pulmonary team. Everyone is there on time and we head right in. Not going to lie – it can be a bit overwhelming to be surrounded in a room with doctors (pulmonologist, nutritionist, nurse, social worker, physical therapist) as they all ask questions on how I’m doing, how I’m eating, etc. The physical therapist is the newest member of my team. She seems cool. She asked me to run up-and-down the hall and jump up-and-down. She also showed Mom and Dad some new airway clearance exercises and stretches that I should do.

IMG_3460

11:00 AM – I’m getting cranky and want to go home. It’s a gorgeous day weather-wise and I’m stuck in a hospital. Time to head home.

Overall, the doctors appeared to be happy with what they saw. I’m in the 69 percentile for height, the 55 percentile for weight. Anytime your weight is over 50% with CF, that’s considered good/acceptable, but the more the better. The “problem” is that I’m so tall. When you factor in my height and weight, I’m left with a Body Mass Index (BMI) of 33 percentile, which is not that ideal. Seeing as my BMI is so low, the team thought it might be beneficial for me to go on a new medication – CYPROHEPTADINE. The thought behind prescribing this medication to me is that I would benefit form the drug’s side effects – increased appetite, and sleep through the night. I still drink a bottle between 9PM – 6AM 2-3 nights a week on average. Mom and Dad are not sold on this new prescription so they and Bama & Pop are trying to a do a better job at getting me to eat more on my own and make me exercise more so that I’m more tuckered out at night.

Since the day was so nice and Mom was anxious to get a Christmas tree, we decided to head out west to cut one down and spend time as a family.

Christmas Tree Farm

We drove an hour or so west to Snickers Gap Tree Farm in Round Hill, VA. Again, taking advantage of a weekday when most people are at work or school, me, Mom, and Dad pretty much had the entire tree farm to ourselves. We walked all around, evaluating Douglas Firs and Colorado Blue Spruces on the property until we finally decided on a  beautiful fir which had a nice full shape. Dad and I cut down the tree and loaded it into the back of his truck.

Dirt Farm Brewery

After running around the tree farm, Dad and I worked up a thirst so we headed to a nearby brewery which was highly recommended by the owner of Snickers Gap – Dirt Farm Brewery.

Then Mom made us go to Luckett’s, near Leesburg. It’s some antique place. But this point I had pretty much lost it. I had dozed off for about 30 minutes in the car on the way here but never took a real nap, so we ran around briefly and then headed home. What a day!

IMG_3424

I cannot thank the team at Children’s enough for such a smooth and quick annual appointment. It’s the best one I’ve had thus far.

Playdate with My Cousins

When you have cystic fibrosis, you often don’t get to hang out with all your friends and family. For one, your parents are overly cautious. Ok, maybe not overly cautious, but they care so much about you, that they don’t take risks. Second, other kids often pick things up if/when they go to daycare. Anyway, it’s super rare that everyone is healthy and free of obligations, so for the first time I got to hang out with my cousins JJ and Luke.

IMG_3469

We all met at Bama and Pops’ house, where we played with my trucks and we danced to Alexa. I asked that Alexa play my new favorite song – Believer by Imagine Dragons.

Switching Health Insurance

Switching benefits providers is never fun. Dad’s firm recently hit 50+ employees so as a result leadership is constantly searching for best value when it comes to benefits and they opted to switch carriers – CareFirst to Cigna. What probably makes switching so bad is the added time required on the phone paired with new deductibles which must be met and not being able to get your medicine that is sitting at your local pharmacy but just so happened to be delivered on the day your insurance carrier switched. Convenient CareFirst.

Mom called Cigna and spoke to a man who was unbelievably helpful.  He assisted by getting me into a drug co-pay program where they convinced Genentech (maker of Pulmozyme) to cover my entire deductible and we’ll only owe $30/co-pay, unlike the $150/mo with CareFirst where we would blow through our entire HSA and FSA in the first month. Can you believe that? In nearly 3 years with CareFirst no one even attempted to help me out with things like that. My team at Children’s got me into a similar style of program for my Creon medication, but that only gets me free Pediasure and vitamins which are certainly helpful, but this gentleman literally saved Mom and Dad $3,000.

fullsizeoutput_1c5c

In closing Mike from Cigna, said “You’re most welcome and the most important thing is Jack’s health and I wish him the best.” Not once did anyone at CareFirst demonstrate empathy over the phone. Mike then made sure that my Pulmozyme was overnighted to my home. While I’m sure Cigna will not be without their challenges and they’ll get their money, Cigna is already a welcomed change for me in terms of my health care.

Other Fun

The weather has been great and I’ve spent a lot of time outside and playing with my cousins. I also have spending a lot of time at Coco’s new apartment. I even helped her move in and even helped Pop hang his new television.

In the News

There’s a relatively new cover story published in New York Magazine that’s become quite controversial and is even described as heart-wrenching by many. It’s been referenced on the radio and even written about by others and people have even asked Mom and Dad about their thoughts. The article centers around a mother’s “wrongful birth” lawsuit and had she known she was to have a child with cystic fibrosis, she most certainly would have aborted during pregnancy. The article itself is a bit upsetting to think that individuals with cystic fibrosis or other diseases and disabilities may not be wanted.

I won’t get into the whole religious /pro-life aspect or anything because to each their own, but I can say that I know my parents and family love me more than anything. Mom and Dad repeatedly say how I’m the best thing that’s ever happened to them and they would never change anything. Do they wish I didn’t have to battle this terrible disease – absolutely! Would they switch places with me – absolutely! Do we all pray for a cure – absolutely! While there is no cure today, that doesn’t mean there won’t be in the future. Anything can happen. Thank you to everyone who’s ever donated. 

Also, I feel like it takes a special person or persons (if you’re lucky to have both a Mom and Dad in your life) to be a parent. Mom and Dad say that becoming a parent requires putting themselves after me (and soon my sister too) and that’s just part of being a parent. I guess, in the case of this article, I have to question whether the mother was ready to become a parent. Accidents and things happen every day and if something were to happen (i.e. car accident, becoming paralyzed playing football, being diagnosed with cancer, etc.) to a child, it would be the responsibility of the parent to see that the child is taken care of and has everything he/she needs. Being born with a disease or disability is no different. Parents step up! Life happens. Life isn’t fair. What makes us different is what makes this world such a great place. I for one am prepared to fight this disease and I know my parents, family, and friends will be by my side. They all love me and cannot imagine a life without me.

In a way, Mom and Dad’s situation was similar. Mom tested positive for G542X (second, most common CFTR mutation). I guess where it began to differ is Mom’s OBGYN office immediately contacted Dad to get tested given Mom’s positive test result. Dad rushed to to get tested and he and Mom waited for what felt like months (it was about a week). Dad’s test came back negative. Mom still has the voicemail on her phone saying, “great news, your husband’s tests came back negative” – eluding to a sense that I would not have CF. Doctors did recommend that the only way to be certain that I did have the disease was to perform an amniocentesis. Given that neither of Mom and Dad’s families had history of cystic fibrosis, Dad’s negative tests were encouraging, the risks of amniocentesis elevate the risk of miscarriage, and Mom and Dad ultimately decided they were not going to abort the pregnancy this far along anyway…they elected to continue on the path to becoming parents – and mighty fine ones at that. On Feb 2, 2015, I was born to two amazing parents who love me and give me every opportunity to live a normal life. They stayed by my side while in Children’s NICU and continue to provide for me today. I was born with cystic fibrosis (CFTR mutations G542X, S466X in cis R1070Q). I cannot thank them enough for the life they’ve given to me and I know each day I make them proud. I can’t wait until I have a sister to share them with and will only be a matter of time before she sees how great they are as well.

It’s Almost Christmas!

On this past Saturday (12/09), we had our first snow of the winter. It was so much fun. I kept the sidewalk cleared of snow, went sledding, and even built snowmen

Lastly, for those of you have asked or plan to do Christmas shopping on Christmas Eve (I’m talking to you Aunt Rachel)….I’m a size 4T in the clothes. I really like trucks but Mom and Dad say I don’t need anymore so any art or craft that I can take to Bama and Pop’s during the work week will do.

See you after Christmas!

Three Year Appointment

October 2017

IMG_3175
Hollywood

Outer Banks (October 1-6)

I had such a good time in the Outer Banks. The weather was sunny and the highs ranged from 70-78 each day. There was a steady breeze every day as well so I never go too hot while on the beach. Some nights actually were a little cool for Mom.

We stayed in Kitty Hawk (Mile Post 3.5) where there was a beach widening effort going so that meant lots of trucks! There were front end loaders, bulldozers, and water pipe trucks. The pipe stretched far along the beach and out to sea. There were boats that patrolled over small areas of water, pumping (dredging) sand back toward the beach so that the beach could be expanded. Dad read an article at one point and said the effort was costing millions of dollars.

Dad and I dug water pipes on the beach. A water pipe is a small ditch that leads all the way from the ocean all the way up to our huge sand castle. It was so much fun.

We went to the Roanoke Island aquarium, located in Manteo, NC one morning. It was great going on the offseason because we pretty much had the place to ourselves. We saw sharks, alligators, sting rays, jellyfish, puffer fish, sea turtles. The museum was really cool because they actually nurse giant sea turtles back to health that are injured. There was this one turtle that was hit by the prop of a boat and she had been there for months, but the staff hopes they’ll release her back into the Atlantic Ocean before long.

We have to thank the Monahans for opening their home and hearts up to us and allowing us the most excellent vacation we’ve had as a family of three to date. It was our first vacation as a family where we’ve left town for more than just a long weekend. It was also the furthest we’ve been away from Arlington since I’ve been born as well.  Hopefully more exciting travels are in our future for our family and I hope they all include beaches and trucks.

One of the cooler non-beach activities when at the beach was going to the different fishing piers, but one in particular because it had an arcade. The Avalon Fishing Pier, located at MP6, was just a short little ride down from where we were staying so I think Dad made us go every night because he wanted to see what the fisherman were catching on the pier. Dad tried surf fishing from the beach, but didn’t have much luck thanks to a combination of mostly east wind, some turned up surf from hurricanes which had recently passed, and the beach widening effort which was still ongoing. Anyway, the arcade was awesome. I played so many games – wack-a-fish, skeeball, truck game and with each game I played, I won tickets. I won so many tickets at this one game! I then traded my tickets in for lollipops each night and we walked along the pier at sunset.

Just because we’re on vacation, it doesn’t mean I can stop doing my treatments. Here I am with my vest and my train track and some new trucks since Dad left mine at home. That’s a front-end loader, cement mixer, anchor truck, a dump truck, and a log truck.

IMG_2682

Another fun thing was going and seeing all of the lighthouses (with the exception of Ocracoke because we weren’t driving that far and riding a ferry). Being drug to lighthouses as a kid, Dad assumed I wouldn’t like it as a kid either, but Dad had the foresight to bring a soccer ball for us to kick around on the grounds. Dad said the park service must of spent some serious money on the lighthouse grounds because he remembers just getting spurs stuck in his feet and no grass to play along. That’s all changed now and I was able to walk into two of the three lighthouses we visited. I could not climb Hatteras Lighthouse because I was too short :(. Maybe next year, I’ll be tall enough.

We went out to eat nearly every night. Probably one of the more, underrated restaurants for children was the Outer Banks Brewing Station because they had a outdoor boat/fort I could climb into and ride down on the slide. Dad and I also played lots of corn hole and Dad drank beer crafted from wind powered windmill.

Currituck Beach Lighthouse

Bodie Island Lighthouse

Hatteras Island Lighthouse & National Seashore

Hopefully next year we can do something similar. Granted, it will probably be slightly different with a baby sister tagging along.

Great Grandma’s 96th Birthday

The timing heading back from the Outer Banks to Arlington couldn’t of been more perfect as it allowed us to swing into the Richmond area to wish my great grandmother a happy birthday and say hello to the rest of the Peden family. Sort of funny was when a member of my extended family rattled off to Dad, “this is the mysterious Jack. It’s my first time seeing him in person.” In a way, that mysteriousness sort of comes along with CF since I tend to avoid large crowds, gatherings, and the indoors during cold and flu season. Anyway, it was great seeing them all!

IMG_3097
Great Grandma appears to be elusive as well. No photos of me and her on Dad’s phone. Just me and a dump truck that my Grandfather gave me.

Cycle for Life (October 8)

Dad’s grueling training routine (2 bike rides totaling maybe 30 miles) leading up to the ride, consisted of digging, building sandcastles, proposal writing, proposal writing, oh and more proposal writing.

The ride itself was interesting. A few takeaways from this year’s ride. It rained the entire ride and there were probably still 80 riders who came out to support the cause. Dad even ran into my former doctor, Dr. Shukla. Mom was torn on how excited to get because ultimately she felt like Dr. Shukla and her had a bond which could not be broken, yet he was riding for some other team. Dr. Shukla, if you’re reading this, Mom wants you on our team next year…got that? The other interesting thing was apparently locals turned some of the small, yellow arrow signs used to navigate riders in a manner which sent the 65 milers on a path that was not part of the course. Dad and many other riders got lost. Some riders got lost multiple times, even following misplaced yellow arrow signs down a gravel path to a yard sale. I think this probably upset the more serious riders, but for riders like Dad who didn’t have bike shoes, or a road bike, or anything more than a borrowed bike, a bike helmet, and one bottle of water, he got a good chuckle out of it. Dad didn’t seem to do too bad overall.

Also, as Dad was recently at his company’s offsite, leadership said that the Cystic Fibrosis Foundation and the Cycle for Life will be to causes that they look to get more involved in through volunteering and company-wide participation. I’d also like to thank each and every rider who rode in my honor. I’m sorry I didn’t get to meet any of you, but given the weather that Sunday and expected finish times were around my nap time, I just couldn’t swing it. Definitely count on me being out there next year…so long as it’s not raining.

Here is the scheduled routes (maps). And here’s Dad’s route? Dad only biked 50+ miles because of the lack of signage (apparently missed the lower loop). Overall, he seemed to do a much better job than other riders who opted for the 65+.

Please support awesome sponsors such as Old Ox Brewing, Charles Schwab, Clark Construction, Genetech, Walgreens, and many, many others. Thank you all!

How not to Train for an Event from Dad

It’s probably not advised to…

  1. Sign up to bike more miles than you’ve ever ridden before (Dad had done 50, was scheduled for 65).
  2. Sign up for an event where you are borrowing necessary equipment (Dad borrowed a bicycle).
  3. Sign up for an event requiring use of body part(s) that have been badly injured within 100 days (i.e. Dad ruptured quad 3 months before bike ride).
  4. Eat pizza, drink beer, watch playoff baseball the night before the event.
  5. Maintain a consistent diet of beer and fried food in the weeks, months, years leading up to an event.
  6. Stay up late at night, glued to your computer, and not so much as moving muscles outside of your fingers for the weeks leading up to the event because you’re writing proposals.

Potty Training

It’s going better than the DC sports in the playoffs. I’ve peed in the potty multiple times and even pooped in the potty. Mom and Dad are really hoping I’ll be fully potty training prior to my sister getting here. Dad says he won’t be buying boys and girls diapers, so I better hurry up and get this potty training thing figured out because I don’t want to wear little pink diapers.

Vocabulary

My vocabulary has really taken off. I say lots of words, sentences, and pretty much communicate to get anything I want or explain anything that’s bothering me. I know my medications – Creon, Miralax, Pulmozyme, Albuterol. Lately, I’ve been telling everyone “You’re mean”, “I want to go home (even when I’m home)”, “I need that”, and “Go away”.

Nationals (October)

Well, that was short-lived. Seriously! What the heck Nationals?!?!?!

We missed Games 1 and 2 because we were on vacation, but Dad took Maja (his mom) to game 5, since the start time didn’t begin until 8PM which meant the game would end well past my bedtime. Dad said Maja looked at him like he was possessed and that there was no way in which he could be her son. Dad warned her that she wasn’t ready for this behavior. Mom hadn’t been to a playoff game or seen playoff atmosphere or seen Dad root uncontrollably through nine grueling innings and act like the most superstitious fan in the park. Dad reminded her that fan is short for fanatic. It wasn’t until the ninth inning before Maja began to wave her free rally towel and “come around” as Dad likes to say. We have a new skipper and Harper coming back so hopefully we’ll get over the hump next season.

Halloween

I was supposed to be a construction worker, but all I wouldn’t wear the construction helmet and safety vest so I more resembled a kid playing with construction trucks. Maybe next year I’ll dress up. I certainly will be helping out with the jack-o-lanterns like I did this year. Little known trick, using a drill makes it easy and fun.

GREAT NEWS!!!

The new median age is up from 41 years old to 46 years old. This was a recent announcement made at the North American Cystic Fibrosis Conference this first week of November. While it’s easy and perfectly fine to get excited, we also have to maintain proper perspective. It’s hard work on those of us with cystic fibrosis and its hard work on the care takers that give us everything they have. It’s important to know that there still is not a cure and we cannot stop until there is a cure. So let’s keep fighting! I thank each and everyone of you for all you do for me. We’re getting so much closer!

Until next time…

IMG_3173

Take a bath you filthy animals!

October 2017

Touch-and-Go & Gender Reveal

Sorry for the delay in posting, but we’ve been busy since getting better. Making up for lost time I guess you could say.

IMG_2182
Saturdays are for the Boys!

Feeling Better

Thank you all for your thoughts and prayers. They must be working!

It’s been nearly eight weeks since I last posted of my staph infection, Dad’s ruptured quad, and Mom’s morning sickness. Basically our house looked like a morgue – I mean, not really, but you know what I’m saying. It was a rough go there for us at the house.

Cross our fingers but we all seem to be doing much better. There was a brief scare for me though. Approximately 72 hours after coming off of antibiotics, I began to have frequent, soft stools – very similar to when I had c.diff so Mom and Dad began to worry. Mom and Dad emailed my pulmonary team (sans Dr. Shukla) and we waited to see what they thought. Naturally, we gathered additional stool samples for testing and waited for what seemed for ever for the results – NEGATIVE!

Lewes, DE – June 21, 2017

As always though, we try and have some fun when we can and we’re all well. We quietly made our way down to Lewes, DE for a weekend, where I got to play with all my cousins and Morgan (who is sort of a cousin by proxy). The only problem with the beach was that it was incredibly hot that weekend and I got a bit overheated…so much so that I was a little disoriented on Friday while there, but I rallied by eating some food an chugging some water. On Saturday we tried again, but I wasn’t having any part of it. We might of stayed down there for 15 minutes tops.

 

Ba-Ba-Mama & Jimmy’s

With Mom and Dad having to take off a few extra hours while I was sick, Mom and Dad had to make up the missed work so Bama and Jimmy stepped up in a big way though Mom thinks I’ve been spending too much time over there because I ask to go over there all the time now.

Bama and I do a lot of painting.

 

Jimmy and I do a lot of racing, but those videos will come next time. In the meantime I’ll leave you with this gem. This is how I ride when at home with Dad.

As a thank you, Mom and Dad took Bama and Pop out to dinner on a nice cool evening in Old Town Alexandria. Naturally I tagged along.

 

Sports Minute

We can all agree this wouldn’t be a good blog post without some discussion on sports or folks stepping up in the fight against CF!

Baseball – I have a little work to do

Baseball – Practice Rain-or-Shine

Loss of a Legend – Don Baylor

This time last week, we lost a great human and ambassador in the fight against cystic fibrosis who lost his own battle with multiple myeloma – Don Baylor.

There were some really great articles that came out as a result of his passing. Here is a link to one of the better stories I found online and here’s another on how he sort of fell into fundraising for the disease.

Bonnie Downing, a 16-year survivor of multiple myeloma, shared her own battle with Baylor after his diagnosis, finally meeting him in person a few years ago in spring training. Yet, while Downing was a spokesman for the disease, Baylor chose to silently fight the battle.

“He was so selfless,’’ Downing said, “that he didn’t want to be a spokesman about his own illness. He wanted to instead talk about his work with Cystic Fibrosis. He said, “I can’t leave these kids.’ He was more concerned about them than himself.

Step Up

Nationals have been stepping up on the field all season long given all the injuries (most recently with Harper going down), maybe one of them could step up off the field and help carry the torch that was first lit by Don Baylor. Just saying..any Nationals player out there want to step up for the cause!?!?!?! Maybe you could help me with my hitting as well.

Speaking of stepping up…if you feel like going for a charity bike ride (20, 40, or 65 miles), join Dad and several of his colleagues and their friends in Leesburg, VA on October 8, 2017. If you fee intimidated, don’t be. Dad’s still recovering from a ruptured quad and has an old mountain bike so chances are you’ll destroy him.

I’m Going to be a Big Brother

To a little girl…

IMG_2291
Saturdays are STILL for the Boys!

Heading back to Aunt Rachel’s beach house this weekend and to see my cousins who’ve been away the whole month of August, so hopefully won’t be too long before I have some more fun stories to share.

Touch-and-Go & Gender Reveal

St. Patrick’s Day & April Fool’s

Surrounded by Great People

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

IMG_0988

Did You Know?

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

Daycare Drama

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

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

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

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

St. Patrick’s Day Reminders

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

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

IMG_0881
Hayden’s Luckiest Day School Project

Mom & Dad Don’t Stress

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

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

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

IMG_0953
Digger, Fish, Crab, Dump Truck (counter-clockwise)

Bonnie’s Beach

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

April Fool’s Day

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

IMG_0961
Enjoying all the natural light that comes into the house now that the magnolia tree has been removed.

DC Sports Minute

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

Wicked Smaaaart

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

IMG_1003

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

St. Patrick’s Day & April Fool’s

Two Year Anniversary

IMG_8144

Two Year Anniversary + Checkup with Children’s

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

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

IMG_0840
Shoveling Mom and Dad’s Walkway

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

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

FullSizeRender 23
Mom’s response to Dad forwarding along Dr. Shukla’s news

Medications & Therapies

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

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

Lewes, DE (Feb 18-20)

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

This slideshow requires JavaScript.

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

IMG_0571
Biiiiig Fire Truck

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

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

Bike Ride around DC

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

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

 

DC Brewer’s Ball & Bishop O’Connell Superdance

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

IMG_0800

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

Here’s one of me and Mom’s outtakes…

Fundraising – Great Strides Walk

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

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

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

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

Quick Vocabulary Update

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

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

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

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

Terrible Twos and Many Thanks

img_7977
Thanks from the bottom of my heart

Biiiiiiiig Thanks!

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

img_7928

Terrible Twos

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

img_7985

2 Year Appointment

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

img_7872
So biiiiiiig

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

img_7916
This park is so much fun

Talk, talk, talk

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

img_7866
If mom only knew…

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

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

Sleeping in my Big Boy Bed

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

img_7890
Donald, how about slowing down the tweets bro

Many More Thanks

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

img_7991
Paige, Me, Abby 

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

me_and_hayden_bath
Bath time with cousin Hayden

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

haydendream
We share the same dream!

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

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