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

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John Deere Gator – Christmas 2017

Merry Christmas

Merry Christmas everyone. I was a really good boy this year so Santa brought me a ton of gifts. He got me a John Deere Gator to replace my John Deer tractor that I broke from riding so much. The good thing is that I got the same brand so I can swap out the batteries and maximize riding time. I also got a lot of trucks to play with. Mom and Dad are making me keep my big, metal Tonka trunks out in the garage. Mom, Dad, and I all agree that the best gifts are donations to the CF Foundation and we received several of those to wrap up 2017.

Happy New Year

2017 was a great year I think (not really sure, because I’m new at this), but we follow a lot of CF’ers on social media and there are a ton out there that would trade places for the year I had, so I’ll take it. I only had one lung infection which was quickly addressed with antibiotics over the summer and I did not have any hospitalizations.

Hoping 2018 is even better, but this flu is super scary. This year’s flu has been one of the worst ones in recent memory and there’s still no sign of letting up. Because it’s so bad, I pretty much avoid all public places (especially indoors), and at times even friends and family. Mom and Dad remain extra careful too – washing their hands religiously and wiping down all surfaces. People who don’t fully understand the disease may think we’re weird, but we’re just trying to be safe.

It’s not you, its me.

Technically, its me, Mom, Dad, and everyone close to me that knows that colds and flu are absolutely horrible for me. So until this flu sort of moves on, you can expect me to remain in isolation – only really being seen at Bama and Pops, Williamsburg Middle School to play soccer with Dad, hiking outdoors, or at my house. Please do not invite yourself over to our house if you have a sniffly nose or think you might be sick. You’re not welcomed! If I get sick, it can lead to irreversible damage to my lungs and requires that I do double the therapy treatments.

7 Day Photo Challenge

I’m sometimes late to the viral things out there, but here’s my 7 days photo challenge. From as best I can tell, the rules are that the photos must be black and white and not feature any people or explanations. I’ll be no different than anyone else who does this challenge by adding explanations, but that’s only because this is intended to be part educational for my readers. Not pictured but probably equally as important and part of my everyday life would be Butter and Salt and Miralax.

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Turning Three Years Old

A few weeks ago, we celebrated my third birthday at Bama and Pop’s house. As you can probably imagine, my favorite gifts were the trucks, play doh, kinetic sand, and donations to the CF Foundation. Even my cousin Paige asked that instead of toys from her friends, that they make small donations to the CF Foundation which was super cool of her and her friends. Bama got  me a snow plow despite Mom and Dad’s requests for no more trucks. Since Andy was out of the country and Bama and Pop were heading out of town, my birthday was lightly attended and celebrated on Thursday night.

Uncle Andrew did stop by for a day on his way back to Hawaii from Europe so that was a nice surprise.

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Dad’s birthday chainsaw and mine from Christmas

Baby Sister

In anticipation of my sister’s arrival, Mom and I picked out a color and Dad and I taped off. Because Mom and Dad didn’t want the paint to bother my lungs, Mom took me to Bama’s house while Dad knocked out the painting. To keep things extra safe, Dad opted for Benjamin Moore Natura Zero-VOC and Zero Emissions paint and the gentleman working the counter at Potomac Paints in Arlington gave Dad the contractor discount when purchasing. Dad let it air out and I returned home to see. Looks pretty good if you ask me.

On Feb 15 at 10:00PM when Mom started having contractions, so Dad drover her to INOVA and left me at home with Bama. Aunt Rachel also went with Mom and Dad.

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Taylor James Peden –  February 16

Born February 16, 2018 at 4:25AM, she weighed 7 lbs, 10 oz and was 20 inches long. Most importantly, we doctors believe she’s healthy. Given that it was flu season, I did not go to see her at the hospital. Dad came home that afternoon to hang out with me and ensure I did my therapies while Mom and Taylor rested at the hospital. And then Mom and Dad brought home my baby sister. Her name is Taylor James Peden.

Unlike with me, Mom and Dad had a “normal” labor, delivery, and hospital experience with Taylor. Taylor was discharged about 36 hours after being delivered which is a vast improvement from my 45 days in NICU. Mom and Dad say it is a bit surreal and equally terrifying driving home with an infant after only two days of life. At two days of life, I had already had my first surgery on my bowels. In a way, Mom and Dad had been spoiled by all the great nurses from Children’s from my entry into the world and it was almost as if they were first time parents. If Mom and Dad had it to do over again, baby Taylor is certainly the way to go. Mom is doing unbelievably well also. Taylor was far more gentler than I was and didn’t give Mom too much trouble during a super quick labor. Perhaps in a future post, I’ll try to recap the differences between the two experiences.

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

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It’s only been a few days, so Taylor and I are still getting to know one another but I love her and I think she likes me too. I enjoy reading and singing to her, but I won’t let her use my blankies. I asked her what type of truck she likes, but she doesn’t talk. She sleeps a lot. Whenever I hear her cry or make noises I run into the room and make sure she’s okay.

Once baby Taylor opens her eyes more, I promise to post good photo of us here.

For those of you on social media…you probably can get a better fix of photos and updates by following Mom on Instagram – @bridgetpeden. Dad has an account too, but isn’t as active – @benjamin_peden.

Drug Breakthrough – Vertex Symedko

Just before Taylor arrived, I had been reading up a recent breakthrough on a new Vertex drug, Symedko. which was recently approved by the FDA. While it doesn’t specifically target my mutations, it is a step in the right direction and helps so many others fighting this horrible disease. Thanks everyone who continues to donate and support the fight.

Going to try to get some rest. It isn’t too easy with baby sister running around the house.

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

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

Aug 14 – Sept 11, 2017 |3 Month Check Up

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Lewes, DE (Aug 17-19)

Went down to Lewes for a few days to hang out with my cousins. Had a great time as always. The weather was warm, but overall it was nice. I also outlasted mafia boss by showing her I don’t give in. She demanded I apologize after throwing some tiny rocks at her and she elected to hold/hug me and carry me back to her house from town unless I apologized. Well I played her like a fiddle…not only did I not have to apologize, I didn’t have to walk home. 😛

National Zoo (Aug 28)

Mom and Dad took me to the zoo one morning, before it got too busy. We got there nice and early and saw all sorts of animals. It got warm as the day wore on but overall it was a nice day at the zoo. Mom and Dad carried me around a good amount of the time.

Miscellaneous Fun & Other Milestones Activities

I’ve officially peed in the potty one time to date. Mom and Dad were hoping I would pick this up, but it just hasn’t been a priority of mine. To demonstrate how much I care about using the potty, I

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Texts from Mom to Dad (see dad’s clever pun)

Also got this gnarly shiner one evening hanging out in the living room. Perhaps I should listen to Dad and stop jumping on all the furniture. This thing lingered for at least 3 weeks and there’s still a little indention in my cheek from this thing.

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And for the most part, it’s been business as usual. I hang out with Pop a lot. I work on my tractor. Dad took me to an outdoor movie theater for all of five minutes. Mom and Dad also took me back to Claude Moore Farms in McLean for a quick visit.

Also, I enjoy sleeping in with Mom sometimes, building and painting things and going for  walks in the woods. I also got a new bedroom set and had cousin Hayden over for a sleepover. My new bed has a trundle so friends and family are always welcome and don’t have to share the bed or sleep on the floor anymore.

3 Month Pulmonary Checkup (Sept 11/19) & New Medication 😦

On Sept 11, Mom and Dad took me in for my quarterly checkup. Oh wait, it was rescheduled to Sept 19 and Mom and Dad could not get someone on the phone to let us know when calling to check ahead so they both took off work for nothing.

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Honestly…which way do I go?

After my last Children’s visit (the nasty one I had for staph infection), a weird, very confusing, and inconvenient situation has arose with respect to my health care. Pediatric Specialists of Virginia (PSV) was thrown into the mix. PSV was created in 2003 as part of a collaborative effort between Children’s National Health System  and Invoa Health System, but for some reason something new has taken place which involves me going to both locations and visiting doctors who may/may not have access to my medical records. This makes for longer hospital visits which is not good for me (added exposure of germs, confusion around medical details, etc.) or my parents (trying to schedule work).

Probably worst than juggling through all the scheduling woes was the fact that I have to begin taking a new daily medication – Pulmozyme. The medication must be refrigerated (pain in the ass) and is to be administered through my nebulizer so it’s another breathing treatment to my regiment so add another 20 minutes to life’s breathing treatments. Therefore me, Mom, and Dad have to clean more nebulizer parts and manage yet another prescription. If you’re a glass, half-full type of person, the idea behind this drug is that it is designed to thin the mucus in my lungs so that they are not as sticky and I’m less prone to picking up staph infection/respiratory tract infections. Let’s hope it works!

Naturally like all new medications, this was rejected by insurance, so my doctors have to send information justifying my need for it. It’s been over a week now and I still don’t have my medicine because of the awful medical/insurance industries.

CF Cycle for Life – Oct 8, 2017

Dad’s training is going really well. He biked a total of 16 miles since signing up for this event and has ran a total of 0 miles, played 0 basketball games, and done zero activities/events of cardiovascular health so he should be in pretty top notch shape come the event.

Click here if you want to learn more about the ride or here if you would like to join his team or donate.

Please Get Your Flu Shots

Please go out and get your flu shots. I got mine. It didn’t even hurt. The nurse was so impressed that I didn’t even flinch. Said she’s never seen a 2 year old act so tough.

Outer Banks – Sep 30 – Oct 5, 2017

I’m off to the Outer Banks this weekend with Mom and Dad for our first, real vacation since before I’ve been born. I’m really hoping for some good weather and fishing while down there.

Nationals

Dad and I are going to be out of town for the NLDS (at least first two games) so please make quick work of the Cubs so that I can catch a game of the NLCS and hopefully World Series.

Speaking of baseball, Dad and I have been playing quite a bit of tee-ball in the back yard. I’m getting pretty good at wacking the ball. Dad said he was most proud when he could overhear me telling my cousin how to place hands on the bat – left hand on bottom and right hand on top.  I’ll try to throw a video or two up here within the next few days.

Stay safe hurricane victims.

Aug 14 – Sept 11, 2017 |3 Month Check Up

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.

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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…

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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

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?

May is Cystic Fibrosis Awareness Month

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How many people can we fit in this playground tunnel? #RockTheRed

May is Cystic Fibrosis Awareness Month

As you may or may not know, May is Cystic Fibrosis month. To do our part, we participated in a walk in Harrisonburg, VA last weekend (not technically May). They raised over $30,000 as a walk but it was a bit scary for Mom and Dad as it was difficult to determine who had CF and who did not. Those of us with CF are asked to wear purple and gold “fighter” shirts such as what I’m wearing below, but since Harrisonburg is the home of JMU and their school colors are the same…well, it was a bit scary. Those of us with CF are not supposed to come within six feet of one another as we run the risk of cross-contaminating. CF is a very isolating and lonely disease for this very reason.

We are walking in another Great Strides campaign in Alexandria, VA this coming weekend (May 6, 2017). Details for the walk can be found here. There will be free food and drinks provided by local businesses. So far, we’ve raised over $11,000 for the walk this year and are leading all teams participating. Thank you!!!

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Lawnmowers! Lawnmowers! Lawnmowers!

Dad is also attempting to utilize some of the other mechanisms provided via the Cystic Fibrosis Foundation (CFF) to establish my legacy. Dad set up the following fundraising site that allows for anyone to donate any amount of money at anytime in my honor (anonymously or not). The site is everlasting and 100% of all money donated goes to the CFF in hopes of one day finding a cure. In just 26 months of being alive, my friends and family have helped raise over $20,000. The idea here is that we’ll always have a sense of how much we/you/everyone has contributed over the years to helping us find a cure in my honor.

We also launched a T-shirt campaign using Booster (a subsidiary of CustomInk). It was incredibly successful and we raised over $1,800 for the Cystic Fibrosis Foundation in their fight for a cure. In addition to the funds that were raised, a lot more folks get to spread awareness to this disease by wearing this cool T-shirt. A big thanks to Eric Hooper for offering up his design services.

So if you missed out on a chance to order one, hit my dad up…he’ll probably end up ordering a few additional shirts for folks that didn’t find out about the campaign until after it ended.

And if walks or t-shirts, aren’t your thing…feel free to pitch an idea to my Mom or Dad or try to get then to sign up for the CF Hike, CF Bike, or a Fundraising Happy Hour – those are always fun!

Speaking of Awareness – Did You Know?

Cystic fibrosis (CF) is the most common inherited disease affecting the developed world, with one in every 2,500 children affected. It is a multi-organ disease, affecting the lungs, gut, liver, pancreas and reproductive tissues. At present about half of those with CF will die by their late 30s from lung disease.

Why We Fundraise & Why We Can Never Give Up

We fundraise in hopes that one day there will be a cure for cystic fibrosis. Lately, there had been a lot of hope behind PTC’s Translarna (ataluren), but recent news certainly let many of us in the CF community down. While reading that a company is stepping away from searching for a cure for CF and that the drug was scrapped due to less than stellar success, it only means one thing – we cannot give up. Take a look at what Jimmy V was able to do for cancer. In just 24 years, The V Foundation alone has raised over $150M for cancer research and thousands of other non-profits have done there part as well. While I do not have the platform yet of Jimmy V, I do have an amazing group of family and friends the have been there for me and my Mom and Dad since Day 1 and I want to thank everyone who has ever donated on my behalf. I cannot thank you enough.

My Cousins Continue to do their Part

Riley, Paige, and Hayden all continue to do a great job with fundraising. Earlier this week they raised $78 on a lemonade and snack stand at their school.

And Dad…

Took his spreading awareness to a whole new level

On a Lighter Note – Funny or Not

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Dad acting like Sidney Crosby and dropping to the ground

 

Mom really thought it was funny when I kicked Dad in the nether region. Dad, on the other hand, did not find this funny at all. He probably laid there for a solid three minutes before catching his breath while I ran around him gloating. While that may or may not be funny to you…we can all agree on one thing that is not funny – cystic fibrosis.

There is nothing funny about cystic fibrosis. When you have CF and you get a cold, you have to spend so much extra time doing therapy that you miss out on the fun things in life like going to the park and stuff. When I’m sick, we do double therapies which equate to about two hours a day (not counting the time it takes to sterilize parts, etc.).

Easter

Easter was cool. I got lots of candy and a scooter which is fun to ride. I mostly danced around the house all morning and played outside with Dad’s drills in the afternoon.

I also hung out with Paige on the neighbor’s swing.

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DC Sports Minute

@Nats – Harper, Zimmerman, Turner, and Murphy are going gangbusters. It such a bummer to lose Adam Eaton for the season after the start he was off to and he can’t really be replaced, but the team seems ready to step up based on Rendon’s 6-6 performance on Sunday. Let’s hope for a deep playoff run. Speaking of…Nationals are officially undefeated in games I’ve attended.

@Caps – Toronto certainly gave us a scare and it isn’t looking good down three games to one. Hopefully the Caps pull out the series and move on to the Eastern Conference Finals. Not counting on it, unless more guys start skating with the passion that Justin Williams does each and every night.

@Wiz – ehh…the Celtics handled them in Game 1 and 2 and even if the Wiz were to slip past the C’s, they would be no match for the Cavs.

Did you Notice?

You didn’t did you? Well I got my first major haircut (that wasn’t a trim with household scissors).

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

May is Cystic Fibrosis Awareness Month

Terrible Twos and Many Thanks

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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.

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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.

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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%).

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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