Been a while and Tough Check Up Today :(

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Taylor Loves Me

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

February 2018

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

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March 2018

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

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

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

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Work, work, work, work (like Rhianna)

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

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Dad jealous of these locks

April 2018

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

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

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

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

May 2018 – Cystic Fibrosis Awareness Month

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

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

Mother’s Day

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

Memorial Day Weekend

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

June 2018

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

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

3 Month Checkup

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

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

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

October Bike Ride (Fundraiser)

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

Join the Team – Click Here

Donate to Dad – Click Here

ALL CAPS!

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

Been a while and Tough Check Up Today :(

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

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

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