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)

Mama Can’t Handle the Truth

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Mama Can’t Handle the Truth

While Mom and Dad can’t complain (they don’t have CF), they do get a short end of the stick from time-to-time as they have to help with my therapies regardless if they feel like it or not and are probably more likely to get sick as they’re constantly around me. We all know that I’m more prone to getting sick so it only makes sense that their exposure is increased. While we don’t know for sure if Mom caught whatever it was that I had, Mom caught something viral and was wiped out. That meant Dad had to step up and handle all the therapies for those couple of days. So while Mom did her best to keep her distance, it wasn’t easy on her and gave way for me to start saying “Da-da” more than ever before. That led to text exchanges such as this…

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It also led to me and Dad becoming tighter than ever before. I’m sure many of you reading are probably thinking…”how could they be any tighter,” but there’s always room for improvement with anything in life. Dad and I took to Mega Blok’s – building some pretty impressive towers. Dad would even build towers for me overnight to wake up to and see in my playroom! We watched movies and even went on some lengthy bike rides.

Instagram – Str8 Flexin’

Something super weird happened recently during this stretch as well. Mom got her first taste of social media and launched her first ever account – Instagram. Now Mama is on the gram all day every day. Dad never thought something could replace her love affair with Daily Mail, but Instagram might just be the one. Mom is always angling for more followers, so I’ll give her a shameless plug on my blog @bridgetpeden.

DC Sports

Overheard Dad telling some friends that he’s not sure he wants me to grow up as a fan of DC sports after the constant letdowns he’s suffered. I keep telling Dad that at some point that has to change and maybe I’ll be coming up at the right time – like those lucky fans of Boston sports when Patriots, Red Sox, Bruins, and Celtics were all hanging banners. The NLDS defeat to the LA Dodgers was just the latest blow.

First Job Offer

Received my first job offer last week. That heavy interest in construction and hanging around construction projects led to a PM on one of the sites to come up to me and Pop and offer me a job.

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Cox Farms & Claude Moore Colonial Farms

Mom and Dad felt obligated to do the pumpkin patch thing so tried Cox Farms in Centerville, VA which everyone raves about. The place has some spectacular reviews, but it scared the living heck out of Mom and Dad because they went on Columbus Day and the place was packed. They didn’t even really have a patch so much as a pen in which they herd all the patrons through and you can grab pumpkins on your way out of the amusement park. They even charge $17/person. After shelling out $34 and leaving after about 20 mins, Aunt Rachel suggested…

Claude Moore Farms which had an $8 admission and charged $1 for a six ounce cup of water and $2 for some terrible sausage sandwich. It was cool to see many of the animals (cows, chickens, ducks, etc.) but there was a lot of wood being burned throughout the exhibits like in the old days so Mom and Dad were a bit hesitant to let me roam around too freely for fear of me breathing in too much smoke so Dad had an even better idea for some outdoor fun…

Country Roads, Take Me Home…

We headed south this past weekend to Dad’s hometown in Surry. Naturally, we did obligatory Pumpkin Patch photos but I never make it easy on Dad as a subject because I prefer to run around and throw pumpkins rather than sit there like a doll. That said, here are a few of the better photos Dad was able to snag of me while at the patch and at the family farm. College Run Farms, located in Surry is free and had thousands of pumpkins to choose from. They even had pumpkin ice cream.

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Born to Run

While the above represents how I behaved as a photographic subject for 90% of the shots, Dad was able to snag a few of me sitting.

Then there wast that time I found a yellow pumpkin. Did you know there were yellow pumpkins?

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Halloween

Mom dressed me up as a circus strong man. I might of worn this costume for all of four minutes…same length of time in which I can hold my iron cross on the rings.

Words and Favorite Things

I’m probably leaving out a ton of things I say or have said to date.

  • Truck­ – by far the most utilized word in my vocabulary that isn’t “dada” or “mama”. I love trucks – all trucks. I have lots of books with trucks and lots of toy trucks. One of my favorite things to do is watch the big construction trucks fly up and down John Marshall as they continue to fix the water pipes.
  • Cheese – this is an easy one and I say it when someone holds up string cheese and sometimes repeat it when smiling for the camera. My favorite string cheese is Horizon, which irks Dad since it’s double the cost for half as much product as its competitors.
  • Teeth – my dental hygiene game is on point. I love brushing my teeth every morning and night. I even try my hand at floss.
  • Up – when wanting to be picked up, placed in high chair, etc.
  • Sit – when i want you to sit down next to me.
  • Book – not a clear “book” but pretty close and everyone knows what I mean when saying it.
  • Ball – referencing the 100 + balls that I leave scattered throughout the house
  • Hi and Bye – classic salutations
  • Baba – when I want a bottle (of milk nixed with Pediasure)
  • Wawa – when I want water
  • Work – when I wake up and look for Dad but he’s not there in bed Monday – Friday

As of this week, I’ve even begun counting 1, 2, 3.

November 

Not sure what the month of November holds, but I’m sure it will be more fun.

Aiming to stay ahead of Mom and her Instagram posts. She steals me and Dad’s photos and pawns them off as her own.  wonder where she gets that from…TMZ perhaps?

Mama Can’t Handle the Truth

Ugh, Spoke too Soon

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Breathing in some fresh air on the front stoop

Too Soon

Put those celebratory beers away for a job well done Mom and Dad (just kidding, you can still have one). Apparently I spoke too soon with respect to all things being well on the health front. That’s the thing about cystic fibrosis which many people without knowledge of the disease fail to understand – to the naked eye, I look healthy and as though I’m doing really well, when in reality that’s partly true at best. The truth is that things are never truly 100% fine and I’ll never be 100% healthy. In this case, the doctors who “put eyes” on me said, I look great and were happy with what they saw…

Then my lab work, x-ray, and throat culture results came in after I left Children’s National. Dr. Shukla called Mom late one night while Dad wrapped up my nightly Chest Physiotherapy (CPT). My x-ray didn’t look great, my blood work showed elevated white blood cell counts, and my culture started to show staph infection in my lungs.

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Chest X-Ray

Visibly upset, Dad and I knew something was wrong. Mom became quiet, listening to Dr. Shukla closely for the next twenty minutes as he shared the diagnosis and plan. It was back on antibiotics (XXXXX) and extra CPT until I kick this infection. When taking my antibiotics, I demonstrate my super-human strength by closing my mouth, wrestling away from Dad’s grips, and spitting any antibiotic that squirts into my mouth back onto Mom and Dad’s faces. It’s quite the scene. I wonder what people would think if they saw this going down.

The Difficult Balance

Mom and Dad do a great job of keeping a clean house (weekly vacuuming, wiping down of surfaces, etc.), but when infection, sickness, or anything rears its head, Mom goes into overdrive on the cleaning and throwing anything potentially contaminated out. While Dad likes a tidy home, Mama in overdrive can be a bit overbearing/overwhelming to say the least. Dad told her it was crazy to throw everything out and replace with new, so she consulted with Dr. Shukla to ask if she was crazy. The verdict, mom is cray cray and she does not need to throw out my toothbrush each day for fear of recontamination. In all seriousness, this paranoia is not at all uncommon for parents and caregivers of those with cystic fibrosis. They want the best for us. Dad forgives you Mom, but we need to come up with a good nickname for when you kick it into overdrive.

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Scott’s Run Nature Preserve 

Recently Mom pleaded with Dad how everything – dust, dirt, germs, crowds – scares her and that she’s terrified to travel south to Dad’s family’s farm for my great grandmother’s 95th birthday party this upcoming weekend given all the rain. This is totally understandably given that Mom is a first time parent, a parent of child with CF (any disease for that matter), I have my first lung infection, etc. While Dad totally understands where Mom is coming from, he also wants me to have experiences that can’t be had in the small confines of Arlington. While Arlington is our safe haven, I bet there isn’t a cow, horse, combine, pumpkin patch, or anything like that in the entire county for me to get excited about. I know there aren’t dirt roads or ponds filled with large mouth bass, sunfish, and crappies. There is the Potomac River, but that can’t match the beauty of the James River.

All I’m really trying to say is that I get both Mom and Dad’s sides feel bad for the often stressful situation it places on them. Mom and Dad both have my safety and health as their top priority, but I think Dad errs on the side of living. That or either he misses his family far more than he’s willing to ever admit. It could also be the fact that living also allows for the guard to be let down some – not entirely because he’s still quick to swoop in and rip me off the kitchen table when I climb up there or pick me up when I fall, but there’s sort of a sense of safety for him at home.

Vest

The timing couldn’t have been better for my vest to arrive as I’m on double therapy duty until I’ve kicked the infection. By far the most expensive item in our house ($15,000), the jury is still out on when we can call the vest a good thing. Initially, it should come as no surprise that the vest is traumatic for me, my parents, and my little cousin Hayden. In a brilliant acting job, Hayden came over to wear my vest and show me that it’s not that bad/scary, but after leaving she communicated to Aunt Rachel that it just didn’t seem fair that I have to wear it all the time. While it will free Mom and Dad up from having to do manual CPT so they can do things like get dinner ready, do laundry, what-have-you, it seems so “permanent” in way. Using this vest will become so entrenched in my daily routine that it will eventually become second nature, but right not it’s just difficult to process despite the advantages it brings. I’m already crying less and less with each time I use the vest.

 

Late Gift & a Few Thanks

I have to thank Uncle P for the awesome tractor. The pedal is a bit tough to reach but the trailer is awesome and I love throwing all my trucks in there. I’ll do my best not to flip it on the hilly terrain like I did with the ATV Bama gave me when I was less than a year old. Haha.

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John Deere Tractor

 

#HTTR

 

Thanks Aunt Rae Rae for watching after me some while Bama and Pop were on their trips to New England and Charlottesville, VA.

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Me and Aunt Rae Rae

Also, huge thanks to the Gummeys for hooking me up with some solid threads. I received a lot of compliments on this sweater with the crab.

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Good weekend for fans of the DMV. Both the Nationals and Orioles made the playoffs and the Washington Redskins evened up their record to 2-2 on the season. O’s will travel to Toronto for the wild card (winner to play Texas Rangers) and Nationals host the LA Dodgers. Baltimore Ravens lost today, but don’t really count since the Orioles were the only baseball team in the area for so many years and DC has always had a football team.

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Ugh, Spoke too Soon

July 17 – Aug 22, 2016

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Lewes, DE

Been a really good month minus the cold I picked up. I was coughing and whatnot for about a week, but per usual…Mom and Dad picked it up big time with the therapies (4x daily) so I cleared it pretty quickly.

July 23-24

Dad’s DC coed team had their big, super fun tournament that weekend, but the temps were close to 110 with the heat index, so I was only able to hang out for the early morning games and come back up in the evening to run around the field while everyone was hanging out playing cornhole so I didn’t see too much of Dad this weekend. That said, as Dad and I hung out the Friday night before, we played around with some eye black like Bryce Harper.

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During the Work Weeks

It’s been so hot up here in recent weeks that I haven’t gotten to spend as much time outside as I would like. Bama and Pop (daycare) do their best to take me out first thing in the morning or later in the evening until Dad gets home to pick me up. So I’ve spent a lot of time inside the last month playing with trains and some new toys that Mom and Dad thought would help make being stuck inside a little more enjoyable. I also really enjoyed watching the Olympics and watching the USA dominate the competition.

Aunt Rachel spent her month (all of August) down at the beach with the girls so it’s been a little sad not seeing them as much as I usually would. They’ll be back soon for school though and I did get to spend a long weekend with them in Lewes, DE where their beach house is located. Me, Mom, and Dad were planning to go the weekend before, but Paige and Hayden were sick and I couldn’t risk picking up another cold or virus. Instead, we hung around town and played in the kiddie pool.

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My Ryan Lochte impersonation

Aug 13-14 – Being Manly

Dad and I did some building in the garage. Mom really wanted these toy bins she saw on some Land of Nod website, but Dad couldn’t come to grips with the cost, so he told Mom he would build them for much cheaper.

Mom wasn’t thrilled about the mess I made with the paint on the driveway, but I think she got over it after seeing the finished product.

Now Dad and I are working on a workbench so that we can build more stuff.

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Raising a Man – Photographer Mom (shot using iPhone6)

Aug 18-21 – Lewes, DE

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Hayden, Me, Riley, Morgan, and Paige

So I finally got to see my cousins for the first time in the month of August. We picked up right where we left off – acting crazy around one another. Last year, they bought this blue mat which floats on the water. I was too small last year and wasn’t walking too well on my own but this year I’m big enough to play on it.

I ran up and down the mat probably 1,000 times. When it was time to go and they rolled it up, I hopped in and crawled through the tunnel.

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Riley was a big help this weekend and the salt air at the beach is so refreshing. I absolutely love it. Can’t wait to get back down there for some more fun.

Geempa also took me down to the visitor center at Cape Henlopen Park and out on the fishing pier. I saw some fish and a lot of fisherman.

Miletones

Words – Can’t really remember what words I’ve told you that I know, but “mama” is still the most popular. I can also sort of say “truck” “duck” “hot” “wow”

Activity – I can jump and get both feet off the ground. My basketball game is second to none. I made my first three shots on the new hoop.

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Baywatch

Uncle Andrew thinks he was paid big bucks to model nude in college…haha.

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Life is Great!

Catch you back here in about a month or less. I have an upcoming checkup with Children’s in early September. Just a checkup so no need to worry.

July 17 – Aug 22, 2016

It’s Been a While…

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Up to no good

Ugh, where do I start. I’ll start with the medical and then hit the fun I’ve had over the last couple months.

Medical – Sorry to Bore You

As anyone who has CF, cares for someone with CF, or is closely associated to someone with the awful disease knows…it is a roller coaster. Further complicating matters for me is the fact that I contracted Clostridium Difficile Colitis (c-diff). While I thought I was in the clear, I was beginning to feel that maybe the Metronidazole by mouth (Flagyl) only suppressed my symptoms (diarrhea, abdominal pains, etc.) and didn’t fully kill off the c-diff because some similar symptoms resurfaced and doctors were all set to start me out on Vancomycin as the next possible medication to try and kill off the c-diff.

Read the papers nowadays and you’ll constantly find articles warning us of superbugs and our reliance on antibiotics. There’s no doubt I’m going to be on more than my fair share of antibiotics, so Mom voiced her concern to my team of doctors at Children’s.

My team of doctors say the easy thing to do is treat. It’s harder not to treat. Ultimately treating is up to Mom and Dad, but hearing that didn’t make things easier on Mom and Dad to make a decision. And because Mom felt I picked up c-diff from Children’s she was losing more and more trust in the care they provided for me up to this point. The decision wasn’t an easy one, but collectively we elected to hold off on treatment and ride it out a little longer knowing I had already proven that I’m a tough kid. Mom also decided it was time to get a second opinion from Johns Hopkins. I’ll explain that visit and what we thought of it vs. Children’s in a later post for those caretakers out there who also wonder the same thing.

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Showing Dad viral videos on JHU’s network

While I can’t be for certain, we’re pretty sure I picked up parainfluenza while at Hopkins. Very shortly after coming home, I began fussing, crying, coughing, etc. So heavy doses of Tylenol and Motrin for about a week and a visit to Children’s for a throat culture. It must of been a bad strain because half of Team Jack ended up getting it (Dad, Bama, Aunt Rachel, and Hayden).

On to the Fun

We’ve been busy as beavers since Easter – first Nats game, bike rides, weddings, beach, fundraising walks, and visiting Dad’s home from growing up.

May 14 – Nationals vs. Marlins (First Game)

The game sort of stretched into my usual nap schedule so I didn’t make the entire game, but we had fun – 6 strong innings in baseball constitutes a quality start. It was a lot of fun watching the pitchers warm up in the bullpen.

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Nats beat the Marlins 6-4; maybe I’m a good luck charm

Comes at a Cost

Going to the Nats game came at a cost. Dad put me to work.

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Helping Dad in the garage

Apr 30/Jun 04 – Fundraising for cystic fibrosis

I can never thank people enough. It’s so much cooler when family and friends get out and participate in the fundraising walks, runs, bike rides, and hikes. So far this year, Team Jack  (Peden) has participated in four Great Strides walks – Alexandria, VA, St. Michaels, MD, and Annapolis, MD, and New Orleans, LA (sorry for the initial omission Seamus, Jared, Wakemans, Bonuras).

More information on future events can be found at CFF.org.

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Cousins JJ and Killian walking in support of me and 30,000 other Americans fighting

Snapchat

Mom and Dad recently discovered snapchat. You would think they took enough photos of me before. SMH

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#BreakingBad #WalterWhite

Jun 18 – Wedding

Uncle Seamus AKA Tamey married Jared in Alexandria, VA thanks to same sex marriage being legalized in the Commonwealth. So happy they did so I could participate as a ring bearer (well sort of) in the wedding. Had they gotten married in NOLA where they live, I might not have been able to be part of the wedding due in part to Mom and Dad not wanting to expose me to germs commonly found while flying.

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I don’t like when sleeves touch my hands

July 04 – Beach

We decided to head to Lewes for the fourth of July.

The salt air had me feeling good and wanting to go back very soon. I think if it weren’t for the traffic woes getting to and from there, we’d be there every weekend.

Surry, VA AKA “God’s Country”

One of Dad’s friends always refers to Texas as “God’s country” but that’s because he’s never been to Surry, where Dad grew up. Founded in 1652, it’s sort of amazing how its managed to remain underdeveloped and keep its rural charm. It wasn’t for a few years ago that the county finally installed its first stop light.

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Mowing the grass in the hot summer sun

We did so much. We went down to the James River, rode the lawn tractor, swam in backyard, fished, and even dropped in on the new winery that opened up across the street from my grandmother’s house.

Just like Lewes, I can’t wait to get back down south to see the family and spend time on the farm. Just wish they could figure out how to improve the flow of traffic on I-95.

Until next time…

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“Yeah, well that’s just my dream…Baseball needs more stars” — Bryce Harper

 

It’s Been a While…

Father’s Day, 5 Month Old Checkup, and Independence Day

I know, I know…I’m long overdue for posting and I’ve let down many of my readers. I’ll try and do better. Here I am swinging in the new swing Mom installed on my cousins’ new playground set. Probably the best $25 Mom’s spent.

Loving the Swing
Loving the Swing

Father’s Day (June 21) – It was Dad’s first Father’s Day so he and I walked into Georgetown and up the Exorcist stairs to kick things off. We’re able to do this now that the doctor cleared him to remove the boot that was protecting his left calf tear. One of the more important things for Mom and Dad to keep an eye on, is my weight, so Dad purchased a scale which uploads it to his phone. Doctor’s told Dad not to be crazy and track it every day, but since he’s been weighing himself consistently for years with a an adult version of the scale, he figured…what the hell. While I’ve been gaining, Dad has fortunately been maintaining so we’re both meeting our goals!

Exorcist Stairs in Georgetown
Exorcist Stairs in Georgetown

Dad also got to snag some swings in the cage at Nationals Park, so was able to sneak me and Mom into the park since it’s not encouraged to bring me around large crowds. Can’t wait until I get a little older and I get to run around out there. Unfortunately for Dad, Nats GM Mike Rizzo, isn’t going to be calling him up anytime soon.

Me and Mom and Nats Park for Dad's BP
Me and Mom at Nats Park for Dad’s BP

5 Month Checkup (July 1) – All was well on the health front during my 5 month checkup. I’ve demonstrated the ability to gain weight (jumped from 11% to 25%) and doctors are bumping my Creon dosage up to four 3,000 unit pills per feed. Dr. Shukla said my goal should be the 50th percentile for weight. I currently weigh 16 pounds (7.35kg) which is about 200 lbs less than Dad. Dad’s now a “regular” at Walgreen’s. Doctors briefly touched on the additional mutations that were identified and explained to me and my parents that there’s an incredibly high likelihood that I’ll be infertile and that I should use protection. I know kids are starting young these days, but I don’t think that discussion was necessary yet…haha. Dr. Shukla also provided Mom and Dad with a new Cystic Fibrosis Passport which Children’s is trying out as something new for parents. It has some generic medical information (weight, height, head, my CF, allergies, etc).

Children's CF Passport
Children’s CF Passport

Independence Day (July 4) – Heading into the weekend, Mom wasn’t sure what she wanted to do, but as the week wore on, she opted for her sister’s beach house in Lewes, DE which is always a lot of fun and because the wind reports were favorable, Dad would get to go fishing so Dad really lucked out on this mini-vacation. I did fairly well on the drive up Friday morning and slept the entire ride back home on Monday.

Hayden feeding me a morning bottle at the beach
Hayden feeding me a morning bottle at the beach

Once again my cousins demonstrate how awesome they are and how much they care about me by raising $170 for the Cystic Fibrosis Foundation (CFF.org) with their Lemonade stand and some new signs. People’s generosity never seem to amaze me.

Riley, Paige, and Hayden slinging that lemonade for CF
Riley, Paige, and Hayden slinging that lemonade for CF

Spending the Days with Coco and Pop (Ongoing…) – Sometime over the last month, Mom gained more comfortable with her dad helping out some during the week and looking after me so she could focus more on work. Out for summer break, Aunt Coco, has also been around to sing and read to me. I’m no Simon Cowell, but Coco has a much better voice than Pop. It’s been a huge help for both Mom and Dad since Dad’s work is picking up with his customer anxious to begin an upgrade to their PeopleSoft system and Mom’s in the middle of their busy season. Thanks Coco and Pop!

Me and Pop Hanging on Back Deck
Me and Pop Hanging on Back Deck

As I said above, I’ll try to do a better job at getting posts out more frequently – at least biweekly.

Father’s Day, 5 Month Old Checkup, and Independence Day