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 :(