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

Two Year Anniversary

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Two Year Anniversary + Checkup with Children’s

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

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

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Shoveling Mom and Dad’s Walkway

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

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

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

Medications & Therapies

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

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

Lewes, DE (Feb 18-20)

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

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

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Biiiiig Fire Truck

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

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

Bike Ride around DC

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

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

 

DC Brewer’s Ball & Bishop O’Connell Superdance

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

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

Here’s one of me and Mom’s outtakes…

Fundraising – Great Strides Walk

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

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

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

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

Quick Vocabulary Update

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

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

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

So that’s it for now…well aside from me giving you a DC Sports Update. Bryce leading the Spring Training in HRs (I’m expecting a huge year), Capitals still leading the Metropolitan Division with hopes of a Stanley Cup run. Wizards are doing well, but I’m not much of an NBA fan. Skins are a dumpster fire.

Mom and Dad…who am I kidding…mostly mom and my cousins have become slightly obsessed with SnapChat. Here’s one of my first snaps…

If I don’t see you at the walk, maybe I’ll see you at one of Dad’s ballgames and or around town since flu season is almost out of here :). Until next time.

Two Year Anniversary

Terrible Twos and Many Thanks

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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

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)

See the Sites DC has to Offer

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Caps Practice

Dad’s softball buddy, Chuck, showed Dad a video of him and his son at Caps practice so Dad thought this would be a good activity to break up the monotony of Bama and Pop’s Daycare so Bama and Pop took me to watch last week. I watched as the guys skated around the ice. To be quite honest, Bama might of enjoyed the watching these young men skate around more than me. Haha.

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Big Fun

Mom and Dad’s friends continue to hook it up. The latest score was huge and has proven to be so much fun. With the cold weather right around the corner, the timing couldn’t be better. Kim and Darrell Smith (family friends of mom’s) thought of me as they were clearing out some of their awesome grandparent gear.

By far the prize in this stash are these big, foam blocks that are so big and nearly take up the entire playroom. I’ve already proven that falling off hurts still and have my first bruise from where I jumped onto Mom and we hit heads.

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They also gave us this cool slide/tower combo for the backyard which will be perfect when I don’t feel like trekking up to Madison Center in the cold.

Photo coming soon…

Poor Hayden, Feel Better

As you all know by now, my family and I are very close. This past weekend, Hayden tested positive for lower-lobe pneumonia. Since she was down in Lewes, DE with the rest of the family (including Bama and Pop) over the weekend, Mom and Dad don’t want to risk Bama and Pop having contracted the pneumonia and pass it along to me, since it would undoubtedly lead to my being hospitalized. Hayden was playing on their phones and watching shows so even Aunt Rae Rae feels this is the best approach. Dr. Shukla said if no symptoms present themselves after four days or so, we’re probably in the clear.

“Better Safe than Sorry”

But more on Hayden. She’s so sweet. Tomorrow is her seventh birthday and while I’m sure all she wants is to feel better now that she’s so sick, here’s her birthday invite to her friends.

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People like my cousin Hayden are what makes the world (our country) a better place.

This was 100% Hayden’s idea according to Aunt Rae Rae. The whole family talks about how hard she is to shop for, so I believe her. This shall also serve as a friendly reminder to all my friends and family to GET YOUR FLU SHOTS.

No Sitters ≠ No Fun

While I enjoy time and Bama and Pop’s Daycare, it’s been a nice change of pace and fun hanging out with Mom and Dad as they split up their work days – Dad 630AM-1PM and Mom 130PM to 8PM. Mom totally understands the necessity in splitting up the schedules in an effort to mitigate exposure to pneumonia but feels her and Dad’s relationship resembles…

“Two ships passing in the night”

So the strain on Mom and Dad’s relationship is sort of a byproduct that is often overlooked as well when understanding cystic fibrosis and it’s impact. That said, Mom and Dad handle it well and know it’s only a brief hiccup which they’ll be back to hanging out and eating dinner together in the evenings in no time.

Mom’s idea of fun was to take me to Target so I was able to get a few new trucks to play with and a new sweatshirt. She really likes this new line, Cat and Jack. Has a nice ring to it.

Dad’s idea of fun is to carry me (literally because he’s scared of germs) all around Pentagon City Mall to the Lids store to get a new hat since the previous one he got me is nowhere to be found and then to Whole Foods to get more of my favorite apple cereal bars. I was asleep on his shoulder for the Whole Foods trip so I only know we were there because he told me. The reason getting a hat was so important is because the Redskins hat Dad got clashes with all my clothes Mom puts me in and I need a hat to keep my head warm.

Yesterday Dad and I headed down to the Mall on his bike and ran around and played all downtown. It was a nice change of scenery. We saw the White House, Washington Monument, the Lincoln Memorial, and a few others along the way. We also saw many protesters, but I’m not exactly sure what they were protesting (they chanted this is what democracy looks like). Most appeared to be junior high students so Dad and I were quite confused. At least they didn’t damage any of the monuments like what occurred in New Orleans and other cities following the election.

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That’s the new African American Museum in the back, left.

Development Update

Totally sold myself short last time in terms of development. I can say so many words and do many more things than I previously disclosed.

Motor: I also love running, skipping, and jumping so I make for a very difficult subject to photograph. I have more hops than most of Dad’s buddies who he played basketball with when first moving to the area. I barely know what it’s like to walk because I’d prefer to just skip or run everywhere. I can get up and down stairs for the most part with little assistance (adults still stand nearby to ensure nothing too dangerous happens). I also can build tall Mega Blok towers though not quite as tall as Dad. I’ve also gotten a much better handle on my battery operated ATV and can ride it around the driveway/patio. I can kick balls. Lastly, don’t leave anything on a nearby table/counter because I’ll reach for it and if I cannot reach it, I’ll push a chair/stool over to grab it.

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On the run…

Words: Baba (Bottle), Baby, Ball, Bath, Birds, Bak (Bike), Buk (Book), Butt, Booger, Bye, Candy, Cheers, Cheese, Choo choo, Da-da (Dad), Eat, Elmo, Fish, Fist, Hat, Hi, Hot, Mama, Moo, Moon, More, One, See,  Sit, Socks, Shoes, Soap, Quirl (Squirrel), Steak, Stinky, Teeth, Truck, TV, Two, Up, Wawa (Water), Watch, Woof, Work.

I’ll also dangerously repeat words at the end your sentences and may/may not have been known to say “Shit”.

Names I know are Mama, Dada, Yi Yi (Riley), Pay (Paige), Hay (Hayden), Coco (Courtney), Bama, and Pop.

Social: I can feed myself most food – steak with a fork, yogurt by spoon, and gummy bunnies by hand. Drink my own bottles of water and milk. I’m not always an easy eater though.

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Cry, cry, cry

Cognitive/Understanding: In addition to doing “cheers” with my bottles, dad’s beer, and mom’s wawa (water) I know how to ask for “five” and “fist” (fist bump).

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Cheers!

I know where my ears, eyes, hair, nose, tongue, teeth, belly button, and pee pee are located. I also know if Dad heads down the basement stairs in the evening, he’s going to pop out next to the garage as he cooks on the grill or throws away trash so I run into my playroom (sunroom) to spy on him from up there.

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Happy Thanksgiving!

Hope I’ll see some of you over the holiday weekend and if not, I’ll try to update how mine was here on the blog.

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See the Sites DC has to Offer

Seal Training, Construction, Summer Concerts, a Checkup, and PSA

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Pop & Bama (TMZ) posing prior to our morning walk

Seal Training

I know what you’re thinking – What could Jack know or want to talk about as it relates to Navy Seal training but the answer is easy really. Mom and Dad operate on two, three hour naps each night if they’re lucky. Mom and Dad really want me to sleep through the night, but I put up a good fight. I wake up at least once, sometimes twice requesting a bottle. I go to sleep late usually 2000 and usually am up by 0700 everyday. And because I love them so much, I beg to sleep in their bed so I spend a lot of the night in combat-mode, kicking and hitting them.

When I’m not pushing Mom and Dad to the limits with sleep deprivation, I host Nerf gun fights at the house. I’m beginning to get really good too. While I cannot cock the guns on my own, I can load them and shoot them without the help of anyone. It got to the point where Dad purchased some goofy chemistry goggles to wear around the house and avoid being shot in the eye. The other day when Aunt Rachel came over I stormed the entryway as she came in the door and shot her!

Here’s a short flick of me with two guns blazing.

And here’s the end of a long shoot out with Dad. I’m sure you could guess, but it wasn’t a pretty ending for Dad. He wasted ammo early and all that he could do was sit there.

Construction

I love construction. I love watching cranes, skids, dump trucks and backhoes redevelop Arlington on the regular. Seriously, there’s no shortage in Arlington of heavy equipment.

Home Depot Runs

Speaking of construction, I’ve been making the runs with Dad to Home Depot lately. Mom likes to call him “Wreck-it-Ralph”, but I think he’s done a good job and addressing things at the house. Dad installed the new thermostat, patched the wall, finished his workbench (sans the clear coat). Said he’s going to build me a little table and chairs next weekend.

Riding the carts in Home Depot is fun. It was funny when Mom and I left Dad to pick out lumber, one employee out of fifty that thought it was cute told Mom I shouldn’t be on there. That’s when she responded with “I grew up riding these things”. For those of you that don’t know my Mom – her Dad (Pop) built the addition on their house and they were regulars at the Home Depot as well. While I don’t think Dad will take on an addition by himself, he’s certainly actively tinkering and heading out to Seven Corners Home Depot.

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Outdoor Concerts

Not sure I want to blow up my dive spot or not, but ^&%$ it…I’ll let you in on an awesome little secret in Arlington. It might be one of the best kept secrets (when the bands are good anyway). Potomac Overlook Regional Park, in the Donaldson Run area of Arlington, has summer concerts on Saturday nights (7-9PM) back in this wooded area that is powered by Solar Energy. It’s a very chill scene for sure. They ask for modest $5 donations which help to keep the concert series going. Last week’s band, Houk and Robinson Duo was solid and I expect another good one this weekend as well. Maybe I’ll see you there and we can all go dancing together. My cousins  (all single and gorgeous) are sure to join me in the fun.

Sliding Annual Checkup

I know what you’re thinking…Jack is only 19 months, why is it an “annual checkup”. Truth be told – between the NICU stay and slowly getting going on my own, my checkup schedule is a bit off. That said, the plan is to continue getting “annual” checkups pushed back slightly until they become truly on my birthday in February timeframe. While today’s news was great, I sure as hell didn’t like being there.

First they made me strip down to my diaper to weigh in, then they had to do chest x-rays, and last was a pretty intensive blood draw. Because we’ve signed me up for some research assignment, they needed extra blood for one of the labs. Surprisingly, the first nurse got a vein on the first go, but I’m so strong that I broke out of Mom’s grips and blood squirted everywhere. Not going to lie, I cried a little bit, so they sent in a team of doctors. One girl was sent in to blow bubbles and play shows on the iPad. Such a sweetie.

But like I said, the doctors were happy with what they saw and think that Mom and Dad are doing a really great job.

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Cheers

And when I’m not busy with Navy Seal training, playing hoops, dancing to live music, participating in construction, I enjoy helping Dad pick out some new beers to try. Westover Market in Arlington has a great selection. Dad would probably be embarrassed to say how often we swing through here on the way home from Bama and Pop’s.

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Public Service Announcement

Don’t forget to get your flu shots! The time is fast approaching for anyone in my inner circle or that I come in close contact with to get their flu shots. Last year’s shots were highly successful so don’t skimp out. My health depends on it.

Lastly, a Special Thanks

So late last week, Dad and I came home to a surprise resting between the storm door and our main door. It was a small bag, containing a incredibly generous gift along with a very thoughtful note, but no name was left behind so we don’t know who to thank, So whoever left behind the surprise, I hope you read this blog and know that the three of us cannot thank you enough. We hope you will come forward as well so we can truly thank you in person.

Time to wrap this up, I have some grocery shopping to do before the Nats game tonight. Trea Turner has been super impressive. Hope he’s the spark to get the Nationals to the World Series. Next week I’ll show you how I challenge Turner for fasted guy in the DMV.

Seal Training, Construction, Summer Concerts, a Checkup, and PSA