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.

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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.

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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.

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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.

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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.

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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

July 17 – Aug 22, 2016

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Lewes, DE

Been a really good month minus the cold I picked up. I was coughing and whatnot for about a week, but per usual…Mom and Dad picked it up big time with the therapies (4x daily) so I cleared it pretty quickly.

July 23-24

Dad’s DC coed team had their big, super fun tournament that weekend, but the temps were close to 110 with the heat index, so I was only able to hang out for the early morning games and come back up in the evening to run around the field while everyone was hanging out playing cornhole so I didn’t see too much of Dad this weekend. That said, as Dad and I hung out the Friday night before, we played around with some eye black like Bryce Harper.

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During the Work Weeks

It’s been so hot up here in recent weeks that I haven’t gotten to spend as much time outside as I would like. Bama and Pop (daycare) do their best to take me out first thing in the morning or later in the evening until Dad gets home to pick me up. So I’ve spent a lot of time inside the last month playing with trains and some new toys that Mom and Dad thought would help make being stuck inside a little more enjoyable. I also really enjoyed watching the Olympics and watching the USA dominate the competition.

Aunt Rachel spent her month (all of August) down at the beach with the girls so it’s been a little sad not seeing them as much as I usually would. They’ll be back soon for school though and I did get to spend a long weekend with them in Lewes, DE where their beach house is located. Me, Mom, and Dad were planning to go the weekend before, but Paige and Hayden were sick and I couldn’t risk picking up another cold or virus. Instead, we hung around town and played in the kiddie pool.

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My Ryan Lochte impersonation

Aug 13-14 – Being Manly

Dad and I did some building in the garage. Mom really wanted these toy bins she saw on some Land of Nod website, but Dad couldn’t come to grips with the cost, so he told Mom he would build them for much cheaper.

Mom wasn’t thrilled about the mess I made with the paint on the driveway, but I think she got over it after seeing the finished product.

Now Dad and I are working on a workbench so that we can build more stuff.

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Raising a Man – Photographer Mom (shot using iPhone6)

Aug 18-21 – Lewes, DE

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Hayden, Me, Riley, Morgan, and Paige

So I finally got to see my cousins for the first time in the month of August. We picked up right where we left off – acting crazy around one another. Last year, they bought this blue mat which floats on the water. I was too small last year and wasn’t walking too well on my own but this year I’m big enough to play on it.

I ran up and down the mat probably 1,000 times. When it was time to go and they rolled it up, I hopped in and crawled through the tunnel.

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Riley was a big help this weekend and the salt air at the beach is so refreshing. I absolutely love it. Can’t wait to get back down there for some more fun.

Geempa also took me down to the visitor center at Cape Henlopen Park and out on the fishing pier. I saw some fish and a lot of fisherman.

Miletones

Words – Can’t really remember what words I’ve told you that I know, but “mama” is still the most popular. I can also sort of say “truck” “duck” “hot” “wow”

Activity – I can jump and get both feet off the ground. My basketball game is second to none. I made my first three shots on the new hoop.

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Baywatch

Uncle Andrew thinks he was paid big bucks to model nude in college…haha.

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Life is Great!

Catch you back here in about a month or less. I have an upcoming checkup with Children’s in early September. Just a checkup so no need to worry.

July 17 – Aug 22, 2016

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
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 two month old son)
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.

Tuesday, April 28, 2015 – Gaining Weight