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Let’s Hear it for Charlotte!

Happy CHD Awareness Week, friends!  I hope everyone is doing their part to make people aware of CHDs and fight for more research and funding.  I wanted to take a moment and brag on the city of Charlotte, which has been home to some amazing people and providers that further the cause of CHD Awareness:

Camp Luck Conference

As I mentioned in my last entry I had the awesome opportunity to participate in the 5th Annual Camp Luck Conference on February 7th (I was even a speaker too!)

CampLuckConference

It was a really awesome time as over 90 people registered for this full-day conference to learn about CHDs.  I got the chance to see lots of friends and even meet some new people.  My son’s Cardiologist, Dr. Sliz gave a really wonderful presentation about CHD Kids and Sports:

Sliz

It was really great how he broke down the suggested types of competitive sports for each kind of CHD.  I’m hoping to flesh out a blog post for another time based upon his presentation, so look out for that!

I also had the chance to learn about the development of the human heart, how it functions, how CHDs can develop, and the future of heart research from Dr. John Klingensmith from Duke University:

Klingensmith

I found it absolutely fascinating and I’m looking forward to seeing what strides we can make towards heart repair!  Kudos also go out to Dr. Klingensmith for staying and sitting through my wacky, meme-filled presentation!

This year’s conference also featured a trio of teens on the Heart Kid Panel who talked about their experiences and live with their respective CHDs.  This was really inspiring and I applaud these heroes for stepping up to share their stories…for a father of a very young heart kid, it’s REALLY encouraging to see teens who have made it through their surgeries and are doing SO well.  Trust me, it’s such a good feeling to know success for our kids is out there, it’s attainable!

Finally I got to give my presentation (sorry I don’t have a photo) to a group of victims captive audience and I have to say, it was actually a lot of fun.  Or, at least, I had a good time!  I’m not going to spoil my presentation in this post, as I’m trying to think through how to best present it on this blog.  But if you missed it, hopefully there might be a chance for you to catch it again another time.  Just sayin 🙂

Anyhow, it’s really awesome that such a conference exists in Charlotte.  I remember attending my first one last year (which was interrupted by Nolan’s admission to the hospital for low o2 sats…because that’s Nolan!) and this year’s group was WAY bigger, so kudos to everyone from Camp Luck who played a part in putting this together.  I hope this Conference continues on for 50 years and beyond, because it’s a great way for heart families in the area to learn and support one another.  I’m already looking forward to next year’s conference!

Levine Children’s Hospital

If you read this blog for, like, more than 5 minutes you know this is where Nolan’s had his surgeries and you know how I feel about this hospital.  The.  BEST.  An amazing group of surgeons, nurses, physicians, etc., working together to get CHD kids to survive AND thrive.

LCH Awards

I can’t say enough how fortunate I am to live here and have access to such a great facility.  And to think, this hospital hasn’t been around all that long…so the way I see it, they’re just gettin’ started!  I can imagine (and hope for) a future where CHDs don’t exist or total heart repairs are an easy reality, and these things will be lead by the wonderful people at Levine Children’s Hospital!

The Cookie Cult

Guys….seriously.  Who doesn’t like cookies?  Amirite?  If you want the BEST cookies, they’re right here in Charlotte, courtesy of The Cookie Cult (http://www.thecookiecult.com/).

CookieCult

This is a wonderful business started by a local heart mom and the product is beyond addicting.  If you eat one, you’ll want to eat 41, I’m not lying.  Do yourself, and your taste buds a favor: put down those dusty Chips Ahoy, tell the Saulsalitos “see ya later”…this is the cookie you want.

Wells Fargo’s Duke Energy Center

This is one of our newer skyscrapers in Uptown Charlotte, sometimes nicknamed “Voltron”.  It’s actually a cool building and lights up in different colors at night, adding a really cool visual to the city skyline.  From what I understand it uses a lot of new technology to be energy efficient and I hear a lot of people love working there.  Last year I found out you can reach out to them regarding lighting the building for a cause.  I thought, “Oh snap, how awesome would a red and blue building be for CHD Awareness Week?”  So in November I emailed them with some facts about CHDs and giving my ask.  After review, they agreed to light up to represent the Heart Warriors on Sunday, February 8th!  Just…look…at…this:

WellsFargoAwareness

I big shout out to Wells Fargo’s Duke Energy Center for doing this…I can’t look at this picture and not feel proud that I live here.  The city looks gorgeous!

 

Charlotte, NC, I love that you love our heart warriors!

 

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What’s the HLHS Dad Up to for Heart Month?

Hey friends, I hope you are all enjoying a superb new year so far!  It continues to be a good one for us! So February is right around the corner and you know that means Congenital Heart Defect Awareness Week (7th-14th) and Heart Months as a whole.  Last year was a blast as I got to do the #32for32 Project and this year there’s a lot of good stuff going on too:

 

Camp Luck Conference

CampLuckConference

On February 7th I will be participating in the 5th annual Camp Luck Conference!  This is an all-day, interactive event here in Charlotte where we’ll talk about the CHD Program at Levine Children’s Hospital, sports for heart kids, dental work for heart kids, yoga/relaxation, transplants, heart mom/dad-related subjects…it’s going to be awesome.  And I am also very honored to add that I’ve been added as a guest speaker as well….ohhhh if they only knew what was coming!  I kid, I kid…it’s gonna be great and I’m looking forward to connecting with other heart families and caregivers.  I will promise that we’ll laugh and there will definitely be memes involved.  If you’re in the area and want to attend the conference you still have some time!  Oh, and it’s FREE!  And for the college kid in you, that includes free breakfast and lunch…WHAT?  So what are you waiting for?  Sign up now: http://www.campluck.com/news-and-events/2015/2/7/5th-annual-camp-luck-conference

 

The HLHS Dad Goes to Washington

congenital-heart-legislative-conference-300x300

 

So part of the reason I started this blog was to connect with other heart dads (and moms too) and to hopefully play a role in making a better world for Nolan and his fellow heart warriors.  I’ve been blessed with the chance to talk to many people about this, including fellow heart parents, medical professionals, the media, etc.  This time I get to take Nolan’s story to the next level: on February 25-26 I have the amazing opportunity to participate in the Congenital Heart Legislative Conference in Washington DC!  Thanks to an generous opportunity from the Pediatric Congenital Heart Association I will join up with other heart families to advocate for more CHD research and funding on Capitol Hill.  I will get the chance to share a small portion of Nolan’s journey with my member of Congress and hope to inspire some change.  It is going to be a whirlwind 2 days but man I am SO excited….I plan to pack my red bow tie and my blue shoes to represent CHD Awareness colors on Capitol Hill and make sure everyone who will listen hears about our heart warriors!

I’d love to know what my readers are doing for CHD Awareness Week and Heart Month: please share in the comments!