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 :(

Merry Christmas & Happy New Year

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Obligatory child photograph with string of Christmas lights

The last post was really delayed. Here’s another one that’s overdue, but I’m committed to getting all caught up and staying on top of my posts. I promise to try and do better as my Cousin Riley and Paige have been telling me how their friends at school check out my site and are always asking about me. I’m doing well, just been super busy, but I guess they’ve been telling you all.

Last year, right before Christmas I was in the hospital for two weeks with a bowel blockage. Thankfully I got out in time for Christmas last year and Dec 20 of this year marked a full year without any hospitalizations! Most people probably take no hospitalizations in a year for granted, but for those with CF, it’s sort of like those “__ number of days without incidents” signs you see hanging up around the workplace.

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The thought of bringing it up is a bit like baseball players talking about throwing a no-hitters…Dad and I rarely want to talk about it. At any rate, I’m doing really well and the last year was a blast and I’m looking forward to turning 2 years old early in the new year and continuing my stretch of good health and keeping my visits to Children’s National Medical Center as check-ups only. My personal goal is to be the Ironman for this with cystic fibrosis and avoid hospitalizations for as long as possible.

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No better sign of being in good health than when Mom texts Dad this. Haha

Christmas

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Not sure whats more pitiful, the tree or lack of gifts

I was much better this year at opening gifts than last year and I received much more gifts as well. Everyone asked what I wanted for Christmas and what they could get me. It was quite simple actually – Trucks, Tractors, Diggers, Paw Patrol, Caterpillar, John Deere.

 

While Santa got me about 4 trucks, family and friends probably got me another 25 or so trucks. I have trucks in every room at home and at Bama and Pop’s house. Some of the trucks move around and play music.

Even had a little fun with this doggie while making holiday rounds.

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I know I still have to get south to see Dad’s side of the family, but we’re trying to target a weekend which isn’t calling for winter weather. We had our first snow the other week. While it was small, Dad and I still got out to shovel the walks of our house and the elderly lady next door.

New Year

I’m a party animal. I stay up late and usually don’t wind down for bed until super late, unless of course I partied a bit too hard. So was the case for New Years Eve…

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Fortunately I thought to take my shows off so no one could sharpie my face

When the weather has been nice outside, we’ve been going up to Madison Center to play some hoops. Dad’s getting his game back after picking back up at Gonzaga College High School’s evening pick-up league. Since joining, Dad’s already gotten hurt and had to take a couple weeks off.

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While basketball is fun, soccer may end up being my sport because I love to run around. Speaking of sports…Skins laid an egg in the final game of the season. While they probably wouldn’t have made it far in the playoffs, those are games that they have to win. Not sure where I am on Kirk Cousins…while he puts up numbers, he can’t seem to win important games and throws untimely picks. Reminds me a lot of Tony Romo. Captain Kirk is probably a top 13 QB in the league but shouldn’t expect to be paid like your active Hall-of-Famer’s (Brady, Rodgers, Roethlisberger, Brees) and I’m not sure he’s in the same class as Wilson, Newton, Ryan). And there are probably several others I’d rather have – Stafford, Winston, Carr and others who’ve proven themselves such as Flacco and Manning. I hope he realizes that when negotiating and doesn’t strap the Skins who need to improve a lot.

Per usual, the Capitals are off to a good start…hopefully they can muster up a deep run at Lord Stanley’s Cup. Congrats to Alzner on consecutive game 500.

Sleeping in my Bed

The other change to the new year is to get me sleeping in my own bed by myself. It usually starts with Mom (mostly) or Dad (he’s too big to share the twin with) sleeping with me and then sneaking out back to their room. I still wake up in the middle of the night demanding my diaper be changed and I be made a bottle. I’m also looking to conquer potty training this year.

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Big Thanks to Bama and Pop

Thanks for taking such good care of me guys. I love you.

 

Merry Christmas & Happy New Year

SEPTEMBER 08 – 23 2015

Let go of my arms!
Let go of my arms!

In the weekend since Labor Day, Uncle Seamus came up to visit me into town. While in town, he made some time out of his busy schedule to hang out with me. He also found the time to contact the local Fire Department and Hazmat team to investigate a potential chemical spill based on the large fish kill showing up in the stream. What appeared to be alarmist behavior (experts suspect dead minnows dumped into stream as nothing toxic came up in tests) by Uncle Tamey, offered up a photo opportunity for me next to a fire truck.

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I had a bit of a runny nose and congestion over this stretch so me, Mom, and Dad stepped up my therapy game. Extra nebulizers and extra Chest Physiotherapy. It must of done the trick because I feel great and am climbing on everything I can pull myself up on. Also got my first of two flu shots I’ll receive for the upcoming season. Any friends and family who wish to play with me should get their flu shots as well.

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Whew, it was another tough work week, so Friday evening, we headed down to Lewes, DE for one last trip since the weather was expected to be nice and boy was it.

Long Day at the Office
Long Day at the Office
Paige and I go for a walk along the beach
Paige and I go for a walk along the beach

Just hanging out on the beach.

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Fun in the Sun

Dad is so funny. I can’t stop laughing.

Dad is so funny
Dad is so funny

Mom, I’ll go swimming if I want to. That whole “don’t go swimming until after 30 minutes of eating” is a myth Mom. I read it on the Internet. Actually the experts at Duke agree with me.

No Swimming after Eating is a Myth Mom
No Swimming after Eating is a Myth Mom. I’m need to train for my triathlon.
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I’m serious Mom…let me go!

The Pope is visiting Washington, DC today and traffic is supposed to be awful so Dad opted to dust off his bicycle and pedal into the office. Here’s a sunrise photo from his ride in along the Custis Trail just south of Teddy Roosevelt Island (shot with Apple iPhone 6). For those hashtaggers out there….#NoFilter.

DC Sunrise

Will someone get me out of this box? Dad thinks placing me in the Honest Diapers box is acceptable parenting. Almost forgot, I have my first tooth popping through on my lower gum so maybe this is Dad’s way of dealing with my teething.

National Pirate Day - Arghhh Matey
You’re going to need a bigger box

While the Nationals are struggling…Bryce Harper continues to roll. Can they give him the MVP already?

SEPTEMBER 08 – 23 2015