Touch-and-Go & Gender Reveal

Sorry for the delay in posting, but we’ve been busy since getting better. Making up for lost time I guess you could say.

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Saturdays are for the Boys!

Feeling Better

Thank you all for your thoughts and prayers. They must be working!

It’s been nearly eight weeks since I last posted of my staph infection, Dad’s ruptured quad, and Mom’s morning sickness. Basically our house looked like a morgue – I mean, not really, but you know what I’m saying. It was a rough go there for us at the house.

Cross our fingers but we all seem to be doing much better. There was a brief scare for me though. Approximately 72 hours after coming off of antibiotics, I began to have frequent, soft stools – very similar to when I had c.diff so Mom and Dad began to worry. Mom and Dad emailed my pulmonary team (sans Dr. Shukla) and we waited to see what they thought. Naturally, we gathered additional stool samples for testing and waited for what seemed for ever for the results – NEGATIVE!

Lewes, DE – June 21, 2017

As always though, we try and have some fun when we can and we’re all well. We quietly made our way down to Lewes, DE for a weekend, where I got to play with all my cousins and Morgan (who is sort of a cousin by proxy). The only problem with the beach was that it was incredibly hot that weekend and I got a bit overheated…so much so that I was a little disoriented on Friday while there, but I rallied by eating some food an chugging some water. On Saturday we tried again, but I wasn’t having any part of it. We might of stayed down there for 15 minutes tops.

 

Ba-Ba-Mama & Jimmy’s

With Mom and Dad having to take off a few extra hours while I was sick, Mom and Dad had to make up the missed work so Bama and Jimmy stepped up in a big way though Mom thinks I’ve been spending too much time over there because I ask to go over there all the time now.

Bama and I do a lot of painting.

 

Jimmy and I do a lot of racing, but those videos will come next time. In the meantime I’ll leave you with this gem. This is how I ride when at home with Dad.

As a thank you, Mom and Dad took Bama and Pop out to dinner on a nice cool evening in Old Town Alexandria. Naturally I tagged along.

 

Sports Minute

We can all agree this wouldn’t be a good blog post without some discussion on sports or folks stepping up in the fight against CF!

Baseball – I have a little work to do

Baseball – Practice Rain-or-Shine

Loss of a Legend – Don Baylor

This time last week, we lost a great human and ambassador in the fight against cystic fibrosis who lost his own battle with multiple myeloma – Don Baylor.

There were some really great articles that came out as a result of his passing. Here is a link to one of the better stories I found online and here’s another on how he sort of fell into fundraising for the disease.

Bonnie Downing, a 16-year survivor of multiple myeloma, shared her own battle with Baylor after his diagnosis, finally meeting him in person a few years ago in spring training. Yet, while Downing was a spokesman for the disease, Baylor chose to silently fight the battle.

“He was so selfless,’’ Downing said, “that he didn’t want to be a spokesman about his own illness. He wanted to instead talk about his work with Cystic Fibrosis. He said, “I can’t leave these kids.’ He was more concerned about them than himself.

Step Up

Nationals have been stepping up on the field all season long given all the injuries (most recently with Harper going down), maybe one of them could step up off the field and help carry the torch that was first lit by Don Baylor. Just saying..any Nationals player out there want to step up for the cause!?!?!?! Maybe you could help me with my hitting as well.

Speaking of stepping up…if you feel like going for a charity bike ride (20, 40, or 65 miles), join Dad and several of his colleagues and their friends in Leesburg, VA on October 8, 2017. If you fee intimidated, don’t be. Dad’s still recovering from a ruptured quad and has an old mountain bike so chances are you’ll destroy him.

I’m Going to be a Big Brother

To a little girl…

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Saturdays are STILL for the Boys!

Heading back to Aunt Rachel’s beach house this weekend and to see my cousins who’ve been away the whole month of August, so hopefully won’t be too long before I have some more fun stories to share.

Touch-and-Go & Gender Reveal

Where is Mama’s Cape?

Where’s Mama’s Cape?

Mama straight up doing super hero stuff lately.

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You mean to tell me Mom doesn’t have a cape?

Well, it’s been a hell of a week or so for us (since my last post). I briefly touched on a virus or something that I picked up recently, knowing full well, I hadn’t kicked it, but also didn’t know what was going on fully so couldn’t really elaborate. That’s sort of the thing with CF – is that you don’t know how bad something is or can become or at what point you should treat because the last thing you want to do is prematurely begin treating with antibiotics when we all know I’ll be on them a lot over the course of my life. What is seemingly a simple virus ends up creating much higher levels of stress, harm, and time spent doing therapies than anyone can truly imagine (unless you have CF).

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I had recently been seen by my Pulmonary team (June 7) and by all accounts, I was doing well. It wasn’t until a a couple weeks later (June 21) that I came down with a terrible fever which scared Mom and Dad. Having seen me spike a fever before, Mom and Dad quickly opted for the Motrin, Tylenol, Motrin regimen and took me to my pediatrician to be tested for strep (strep test was negative). They also began performing the “Sick Plan”. While that suppressed the fever that I demonstrated over the course of three days, it wasn’t able to resolve what we came to find out days later.

Later that evening, Mom stayed with me and my spiked fever while Dad went to play softball with his men’s team in Arlington. Dad, being Dad, thought he was still in his twenties so when he sharply hit a ball to the team’s third baseman, he thought he needed to “grab an extra gear” to avoid getting thrown out at first base. Silly Da-da!

Dad’s brain said to run faster, his body said fat chance old man.

In doing so, he suffered a full-thickness rupture of his rectus femoris muscle (quadricep) in the upper half of his thigh. The photos are pretty graphic (and impossible to show you the front of leg without cropping the image), but for as bad as the injury is (he actually avoided surgery), I think we can all agree that it doesn’t come close to how and bad CF is.

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Mom now faced the daunting task of working and looking after two* of us boys – one of us 2 years old and not feeling well, but still manages to run around and one of us mid-thirties and no longer capable of walking, cooking, cleaning, helping out with chasing me :). To say Mom was upset would be the biggest understatement of all time. Mom’s non sympathetic ways softened up a bit once she took Dad for his second opinion and she heard how bad the rupture was. The doctor even told her to “Be nice to him” on Friday (June 23).

* Sort of Under the Radar Announcement *

In the above paragraph, I mentioned Mom looking after two of us boys. Well, truth is…it could be more and Mom is extra deserving of a cape. Mom has been undergoing In Vitro Fertilization (IVF) treatments for the last few months with the help of Dad. The process actually started long ago, but given our family genetics, Mom and Dad opted to conduct additional genetic testing prior to implantation of the embryo in hopes of eliminating the possibility of another child having cystic fibrosis. Mom and Dad did not have fertility issues before, so this was more of a means to protect me and have a healthy child.

Mom and Dad wouldn’t trade me for the world, but Mom and Dad would do anything (any dollar amount, etc.) possible to ensure I was healthy. IVF offers Mom and Dad the best chance for their next child and it’s arguable that having another child with CF in the household would further bring down my health and I would bring down his/her’s depending on studies that are out there. For these reasons, Mom and Dad chose IVF.

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I’m going to be a big brother!

It’s still super-duper early to be announcing this, but Mom is already experiencing nausea and an upset stomach so she’s been a trooper. We believe she’s about six weeks or so along and she’s schedule to have a sonogram next week. Again, I know it’s early, but I feel that its necessary to explain how much Mom is taking on at the moment. For any other CF families out there, we’re happy to discuss this more!

Editor’s Note: Naturally, Mom and Dad were hesitant about announcing this, but felt this is our story, and it’s life. Nothing to hide and many of our closest friends and family knew we were attempting this often private endeavor.  

Children’s Culture & Lung Listen

On Monday, June 26, Mom and Dad felt my condition had worsened enough and felt it was best to get a culture from my team at Children’s. A nasty, nasty cough had developed over the weekend and Mom and Dad’s attempt to kick this with the “Sick Plan” and Motrin/Tylenol didn’t seem to help. For this of you who don’t know, the “Sick Plan” requires I double up on my therapies to four times a day. Dr. Sami took a listen to my lungs and agreed that I was not in good shape – sounded wheezy. She voiced to Mom that I may need to be admitted, but in the meantime we could try a steroid and increase nebulizer treatments to every 4 hours while we wait on results of the culture.

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Lying on floor, waiting for Mama to finish her shower

Therapies = No Fun + Ultimate Time Suck

While I felt relieved I didn’t have to be admitted, I knew I wasn’t in the clear. I knew the next few weeks were going to suck big time. To put it into perspective, I do therapies every four hours and each therapy is give or take thirty minutes, sans the time required to boil parts, go to drug stores, etc. For simple math we’ll say each therapy takes 30 minutes and I was doing 6 therapies a day. That’s 3 hours of therapies daily and over a 24 hours worth of therapies since I saw Dr. Sami a week ago and counting. At least Mom and Dad get to divide and conquer therapies. I’m not so lucky.

And because Mom felt left out on my first Therapies cut and there are more than enough photos of me doing therapy…

We nervously awaited a call from Children’s. For several days, we simply stuck with steroids and increased nebulizer treatment with little relief in site. Naturally this waiting makes us all very anxious since we don’t know what’s wrong and nothing seems to be working to improve my situation.

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Mom and Dad boiling my neb parts and mun-yas (pacifiers) twice daily.

Positive Culture

On Thursday, June 29 Dr. Sami contacted Mom to inform her that the culture came back positive for staph infection. This is the second time I’ve contracted staph and it’s never a good thing. There’s no telling where I picked it up from, but chances are the virus caused my lungs to produce more secretions which in turn caused my lungs to be stickier than normal and resulted in me being more prone to pick up staph.

This is one of the main reasons me, Mom, and Dad are so careful when others are sick or I am sick. We just sort of stick to ourselves and stay in our domain.

Positive cultures are also bittersweet since it means I’ve contracted something (bad), but at the same time we now have a way ahead to begin treatment (good).

The new plan entailed weaning off the the steroid (Prednisolone) and begin taking an antibiotic (Sulfameth-Trimeth) AKA Bactrim, all while continuing therapies every four hours. It’s 10mL of the antibiotic twice a day. Not sure if you know how much that its, but for a two year old like me, it’s far more than I ever want to consume. The syringe is huge!

Making Lemonade

There’s an American proverbial phrase,

When life gives you lemons, make lemonade

and it’s pretty applicable to those of us with CF and those of caring for those with CF. The past 2+ weeks have sucked, but me, Mom, and Dad have managed to sneak some fun in between therapies and medications.

Thanks to everyone who came by to check in on me, drop off toys, and offered to lend Mom and Dad a hand this past week. It hasn’t been easy, but then again, nothing in this world ever is…

Older Video, but I Learned Reverse

Quickly Outgrowing my John Deer Tractor

Twinkle Twinkle Little Star

Enjoy your July 4th holiday!

 

Where is Mama’s Cape?

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