Been a while and Tough Check Up Today :(

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Taylor Loves Me

Super sorry for the incredibly long delay in writing but we’ve been unreal busy since Taylor’s arrival. Prior to Taylor’s arrival, I ran the roost and had complete control. Since it’s been about three months, I’ll attempt to address recent events chronologically and hit on the biggest updates toward the end (CF Awareness Month + My Last 3 Month Check-Up + October Fundraising Bike Ride).

February 2018

In case you missed my last post, I’m now three years old, so “big boy”. While I consider myself a big boy, I’m still not fully using the potty. Mom and Dad are attempting to incentivize me by hanging a truck over the potty. It ain’t working! That being said, I need to get on that Now Mom and Dad are springing for double the diapers. Yikes!

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March 2018

I’ve still yet to miss a therapy. Mom and Dad don’t mess around when it comes to therapy and even Taylor has gotten in on the bit.

Toys R Us announced they were closing their doors so Dad thought it was fitting to take me in there to see what all the hoopla was about since a) i had a $20 gift card from Christmas and b) dad says kids only know about Amazon these days so its important to see why businesses failed. Anyway, Toys R Us is legit and all there stuff was 30% off so I got to pick out a new tractor and some legos.

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March also brought us some measurable snowfall so Dad and I sweep ours and our neighbors’ driveways. We also did some sleigh riding to which we wiped out big time on one hill, but we were okay. We’re tough.

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Work, work, work, work (like Rhianna)

Also March brought out the clippers. Dad brought me to the barber to cut this mop. Dad was dumbfounded when the 5-minute hair cut from Westover Barber cost more than his haircut at the Ballston Barber that includes hot towel and straight blade shave. This must be one expensive lollipop.

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Dad jealous of these locks

April 2018

Dad bought me a bicycle from REI, but quickly returned it because I’m not ready to ride it and I want one that’s bigger than what Dad bought. Hoping he gets me one soon so I can bring it to Rachel’s beach house and ride all summer long. Rachel doesn’t know this yet, but I’m going to angle to stay with them all August because Hayden is my best friend in the whole, wide world.

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April also brought some warmer temps so I got outside and did some hiking, watched Dad play softball, and played lots of soccer at Williamsburg/Discovery.

Me, Mom, Dad, and Taylor also went out to eat for the first (hopefully not last) time as a family. Matchbox pizza in Mosaic was super accommodating to the fam.

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Me and Taylor continue to grow close. She loves me and I love her. I help her with her munyas (pacifiers). She doesn’t talk or say anything. She also is not allowed to play with my trucks. Hayden is my best friend. Me and her ride around in my John Deer Gator and do yard work everyday (not literally, but most Sunday’s when we all go to Bama’s for dinner). Pop is mostly on the hook for yard work Mon-Fri.

May 2018 – Cystic Fibrosis Awareness Month

This month flew by and I didn’t do anything this year to let you all know about it. Shame on me. Anyway, May is CF awareness month and there’s been so much going on with respect to the disease. There have been huge improvements on the drug front some of which help those of us with certain mutations incredibly. Unfortunately, I’ve got mutations which have yet to see huge advancements, but I hold out hope that I’ll benefit from major breakthroughs before long as well. It’s only a matter time.

Congress also passed the Right to Try Act. While I’m not 100% sure whether I support this or not, it’s news! Some people believe this is great as it allows those of us with CF the ability to gain access to non FDA-approved drug trials, but the CF Foundation isn’t so supportive. Only being 3 years old, there is very little opportunity to participate in drug trials. Most are reserved for those individuals at least 5 year old.

Mother’s Day

We spent Mother’s Day in Old Town Alexandria with Mom and Bama and the rest of the fam. Where but Don Taco would a bunch of Irish spend the day. We had a great time and ran around the town for a few hours before tuckering ourselves out and heading home.

Memorial Day Weekend

Memorial Day Weekend sent us to Dad’s homeland (the Farm, the 757, Surry, Hampton Roads). We spent time down on the James River, visiting tractor stores, throwing water balloons, fishing in ponds, and listening to live music at the Farm. We also spent time with my great Grandma. Making 96+ look good Grandma. Me and Taylor love you so much. Can’t wait to get back down there.

June 2018

Tomorrow (June 2) is the Washington DC Cystic Fibrosis Walk. If the weather holds up, we might head down there for a few to listen in and participate, but we aren’t fundraising for the walk this year. We’re focused on the bike ride (see below)!

June is also bringing Washington DC hockey for the first time in 20+ years! Go C-A-P-S, CAPS, CAPS, CAPS. Let’s get that Stanley! Ovi is overdue!

3 Month Checkup

Today’s monthly checkup didn’t go as well as we had hoped. While we still won’t know the results of my culture for at least a week, my team of doctors were less than satisfied with my weight – well mostly my Body Mass Index (BMI). Crazy to think I’m knowing about BMI at age 3, but hey. I’m tall which is no surprise if you look at Mom and Dad. And while you would think being skinny is a good thing, it’s not when you have CF. I’m 75% for height, 50% weight, but in the 20s% for BMI which is less than ideal. The doctors warn that if I don’t put on weight in the next three months a G-Tube is what I can expect. This is not what me, Mom, and Dad were expecting to hear. For all we knew, I was doing well, eating “okay”, and healthy. Apple bars, bottles of milk, string cheese, yogurt, and cashews are no longer going to cut it. I have to eat more. I have to get big and strong.

Mom and Dad acknowledged that since Taylor arrived, that they’ve slacked off a bit with the food exploration and pushing, but they didn’t realize things had turned so poorly and are fully committed to doing whatever it takes to avoid a G-Tube. We’re starting by actually taking the Periactin (Cyproheptadine) that was prescribed about six months ago. It’s an antihistamine which has a side effect of  “increase appetite” therefore that’s the reason I’m going to start to take it. Another side effect is that it causes drowsiness so that’s why Mom and Dad held off on giving it to me before as they felt it was important for me to be full of energy and running around like crazy. It’s such a difficult balance.

CF is scary. I can look big and strong, but in reality, I need to do more than everyone around me just to keep up. Doctors say everything goes to head first, heigh second, weight third, then lungs and other things so its important to pack on the pounds. Seeing isn’t believing with CF.

October Bike Ride (Fundraiser)

It’s a ways off, and Dad’s still not really making a push, but for those of you consider making donations for great causes this year, give the Cycle for Life a look or better yet, join the team. There are 20, 40, and 65 mile options and Dad’s company is hoping to be a sponsor of the event this year. Last year was a really rewarding time despite the rain.

Join the Team – Click Here

Donate to Dad – Click Here

ALL CAPS!

Let’s go Ovi, Backie, Willy, Holtby and the rest of you all! Let’s bring the Stanley back to ol DC. We’re long overdue and me and the fam are trying to celebrate.

Been a while and Tough Check Up Today :(

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!

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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.

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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.

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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.

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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!

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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.

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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.

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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

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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.

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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!

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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…

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Take a bath you filthy animals!

October 2017

Where is Mama’s Cape?

Where’s Mama’s Cape?

Mama straight up doing super hero stuff lately.

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You mean to tell me Mom doesn’t have a cape?

Well, it’s been a hell of a week or so for us (since my last post). I briefly touched on a virus or something that I picked up recently, knowing full well, I hadn’t kicked it, but also didn’t know what was going on fully so couldn’t really elaborate. That’s sort of the thing with CF – is that you don’t know how bad something is or can become or at what point you should treat because the last thing you want to do is prematurely begin treating with antibiotics when we all know I’ll be on them a lot over the course of my life. What is seemingly a simple virus ends up creating much higher levels of stress, harm, and time spent doing therapies than anyone can truly imagine (unless you have CF).

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I had recently been seen by my Pulmonary team (June 7) and by all accounts, I was doing well. It wasn’t until a a couple weeks later (June 21) that I came down with a terrible fever which scared Mom and Dad. Having seen me spike a fever before, Mom and Dad quickly opted for the Motrin, Tylenol, Motrin regimen and took me to my pediatrician to be tested for strep (strep test was negative). They also began performing the “Sick Plan”. While that suppressed the fever that I demonstrated over the course of three days, it wasn’t able to resolve what we came to find out days later.

Later that evening, Mom stayed with me and my spiked fever while Dad went to play softball with his men’s team in Arlington. Dad, being Dad, thought he was still in his twenties so when he sharply hit a ball to the team’s third baseman, he thought he needed to “grab an extra gear” to avoid getting thrown out at first base. Silly Da-da!

Dad’s brain said to run faster, his body said fat chance old man.

In doing so, he suffered a full-thickness rupture of his rectus femoris muscle (quadricep) in the upper half of his thigh. The photos are pretty graphic (and impossible to show you the front of leg without cropping the image), but for as bad as the injury is (he actually avoided surgery), I think we can all agree that it doesn’t come close to how and bad CF is.

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Mom now faced the daunting task of working and looking after two* of us boys – one of us 2 years old and not feeling well, but still manages to run around and one of us mid-thirties and no longer capable of walking, cooking, cleaning, helping out with chasing me :). To say Mom was upset would be the biggest understatement of all time. Mom’s non sympathetic ways softened up a bit once she took Dad for his second opinion and she heard how bad the rupture was. The doctor even told her to “Be nice to him” on Friday (June 23).

* Sort of Under the Radar Announcement *

In the above paragraph, I mentioned Mom looking after two of us boys. Well, truth is…it could be more and Mom is extra deserving of a cape. Mom has been undergoing In Vitro Fertilization (IVF) treatments for the last few months with the help of Dad. The process actually started long ago, but given our family genetics, Mom and Dad opted to conduct additional genetic testing prior to implantation of the embryo in hopes of eliminating the possibility of another child having cystic fibrosis. Mom and Dad did not have fertility issues before, so this was more of a means to protect me and have a healthy child.

Mom and Dad wouldn’t trade me for the world, but Mom and Dad would do anything (any dollar amount, etc.) possible to ensure I was healthy. IVF offers Mom and Dad the best chance for their next child and it’s arguable that having another child with CF in the household would further bring down my health and I would bring down his/her’s depending on studies that are out there. For these reasons, Mom and Dad chose IVF.

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I’m going to be a big brother!

It’s still super-duper early to be announcing this, but Mom is already experiencing nausea and an upset stomach so she’s been a trooper. We believe she’s about six weeks or so along and she’s schedule to have a sonogram next week. Again, I know it’s early, but I feel that its necessary to explain how much Mom is taking on at the moment. For any other CF families out there, we’re happy to discuss this more!

Editor’s Note: Naturally, Mom and Dad were hesitant about announcing this, but felt this is our story, and it’s life. Nothing to hide and many of our closest friends and family knew we were attempting this often private endeavor.  

Children’s Culture & Lung Listen

On Monday, June 26, Mom and Dad felt my condition had worsened enough and felt it was best to get a culture from my team at Children’s. A nasty, nasty cough had developed over the weekend and Mom and Dad’s attempt to kick this with the “Sick Plan” and Motrin/Tylenol didn’t seem to help. For this of you who don’t know, the “Sick Plan” requires I double up on my therapies to four times a day. Dr. Sami took a listen to my lungs and agreed that I was not in good shape – sounded wheezy. She voiced to Mom that I may need to be admitted, but in the meantime we could try a steroid and increase nebulizer treatments to every 4 hours while we wait on results of the culture.

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Lying on floor, waiting for Mama to finish her shower

Therapies = No Fun + Ultimate Time Suck

While I felt relieved I didn’t have to be admitted, I knew I wasn’t in the clear. I knew the next few weeks were going to suck big time. To put it into perspective, I do therapies every four hours and each therapy is give or take thirty minutes, sans the time required to boil parts, go to drug stores, etc. For simple math we’ll say each therapy takes 30 minutes and I was doing 6 therapies a day. That’s 3 hours of therapies daily and over a 24 hours worth of therapies since I saw Dr. Sami a week ago and counting. At least Mom and Dad get to divide and conquer therapies. I’m not so lucky.

And because Mom felt left out on my first Therapies cut and there are more than enough photos of me doing therapy…

We nervously awaited a call from Children’s. For several days, we simply stuck with steroids and increased nebulizer treatment with little relief in site. Naturally this waiting makes us all very anxious since we don’t know what’s wrong and nothing seems to be working to improve my situation.

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Mom and Dad boiling my neb parts and mun-yas (pacifiers) twice daily.

Positive Culture

On Thursday, June 29 Dr. Sami contacted Mom to inform her that the culture came back positive for staph infection. This is the second time I’ve contracted staph and it’s never a good thing. There’s no telling where I picked it up from, but chances are the virus caused my lungs to produce more secretions which in turn caused my lungs to be stickier than normal and resulted in me being more prone to pick up staph.

This is one of the main reasons me, Mom, and Dad are so careful when others are sick or I am sick. We just sort of stick to ourselves and stay in our domain.

Positive cultures are also bittersweet since it means I’ve contracted something (bad), but at the same time we now have a way ahead to begin treatment (good).

The new plan entailed weaning off the the steroid (Prednisolone) and begin taking an antibiotic (Sulfameth-Trimeth) AKA Bactrim, all while continuing therapies every four hours. It’s 10mL of the antibiotic twice a day. Not sure if you know how much that its, but for a two year old like me, it’s far more than I ever want to consume. The syringe is huge!

Making Lemonade

There’s an American proverbial phrase,

When life gives you lemons, make lemonade

and it’s pretty applicable to those of us with CF and those of caring for those with CF. The past 2+ weeks have sucked, but me, Mom, and Dad have managed to sneak some fun in between therapies and medications.

Thanks to everyone who came by to check in on me, drop off toys, and offered to lend Mom and Dad a hand this past week. It hasn’t been easy, but then again, nothing in this world ever is…

Older Video, but I Learned Reverse

Quickly Outgrowing my John Deer Tractor

Twinkle Twinkle Little Star

Enjoy your July 4th holiday!

 

Where is Mama’s Cape?

Giving Thanks (post is about two months behind)

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Giving Thanks

It all starts with Team Jack. I’ll never be able to thank Team Jack enough. Team Jack is all the friends, family, and doctors that are there for me and my family as we fight CF. Thanks to my family who ensures I perform my therapies each and every day, stays up with my prescriptions, stocking my favorite foods – gummy snacks and apple cereal bars, washing my hands frequently. I cannot begin to list all the things you do for me, but thanks from the bottom of my heart. I’ll try to call attention to a few others…

I have to thank Mom and Dad’s friends who help to raise awareness and volunteer their time at various events throughout the US and who run meals to them at Children’s while I’m there. I like to thank the ones that have made and continue to make donations (no amount is too small).

I have thank family and friends for understanding the sensitivity of the disease and how cautious or “flaky” it makes Mom and Dad, so much so, we still hear from time-to-time, “I’ve yet to meet Jack” (sort of like that friend who swears his has a girlfriend but no one has ever seen her and she cannot be found on social media). I really do exist people and Mom and Dad aren’t crazy, well at least when it comes to reducing my exposure to colds, germs, and sickness.

Thanks to everyone who has gotten a flu shot. It won’t make you sick. That’s a myth. Google it.

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Thanks to the doctors at Children’s National Medical Center for…uh…saving my life not once, but twice already with addressing the bowel blockages. Thanks to my Pulmonary Team who consistently monitors me and keeps Mom and Dad up to speed on the medical breakthroughs. Without them and other doctors CF would likely be seen as a pediatric disease. Also thank you for making the process of getting my Vest so easy and painless on Mom and Dad. The Vest procurement turned out to be the least troubling health insurance hurdle to date.

Thanks to my pediatrician for squeezing me in when needed and thanks for not forcing me to wait in the waiting room.

My early December checkup at Children’s went well. My team of doctors says whatever “it” is we’re doing is working and to keep it up!

Lastly, thanks to these guys!

Cleats for a Cause

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Rarely appearing to understand its audience, the NFL got it right weeks ago with its Cleats for a Cause campaign. The NFL allowed players to express individualism which would otherwise result in uniform infractions where players are fined to wear custom cleats that support causes that are important to them.

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Believe it or not, there were actually three players to sport cleats supporting the Cystic Fibrosis Foundation and raising awareness – Jarvis Landry (Miami Dolphins), Shaq Lawson (Buffalo Bills), and Charles Johnson (Minnesota Vikings). Seeing as there are 1,696 active players in the NFL at any given time, that’s roughly .18% of fall players bringing awareness. That’s not too shabby. It would be cool to see MLB and other leagues follow suit. Would love to see Trea Turner pick up the cause. I think it’s a natural fit with his number 7 and all (The seventh pair of chromosomes contains a gene called the cystic fibrosis transmembrane regulator (CFTR) gene.). The CF Foundation is conveniently located in Bethesda, MD. What do you say Trea?

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Each player has reasons for why they chose to raise awareness cystic fibrosis. Charles and his wife were told by doctors that their daughter might have CF. Jarvis lost his “first love” to the disease at age 24. I’ve yet to find out how Shaq was impacted outside of supporting his “little brother Adam Roy”.

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As you can see these cleats are pretty cool. Best of luck to these guys!

Thanks, I’m going to keep fighting cystic fibrosis as best as I can.

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Bustin’ Out The Big Guns to Fight CF
Giving Thanks (post is about two months behind)

Mama Can’t Handle the Truth

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Mama Can’t Handle the Truth

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

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

Instagram – Str8 Flexin’

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

DC Sports

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

First Job Offer

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

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Cox Farms & Claude Moore Colonial Farms

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

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

Country Roads, Take Me Home…

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

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Born to Run

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

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

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Halloween

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

Words and Favorite Things

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

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

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

November 

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

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

Mama Can’t Handle the Truth

Ugh, Spoke too Soon

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Breathing in some fresh air on the front stoop

Too Soon

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

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

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Chest X-Ray

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

The Difficult Balance

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

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Scott’s Run Nature Preserve 

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

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

Vest

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

 

Late Gift & a Few Thanks

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

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John Deere Tractor

 

#HTTR

 

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

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Me and Aunt Rae Rae

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

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

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Ugh, Spoke too Soon