The Tin Man's Heart Watch Day #11

Night-Night.

The Tin Man's Heart Watch Day #10

The first Wednesday of every month is our Mended Little Hearts meeting. The Orlando chapter was started in May of 2012 and has been an amazing asset for us as we've walked through Holden's journey. Besides, it is always fun to round up all the heart kids and watch them run around recklessly for 10 or so minutes before they tire out. (True story: Someone, who shall remain unnamed, but might be the father of Holden, actually organized and put on a July picnic for the group. It was a billion degrees and there were kids with heart issues subjected to the shelter-less heat. Genius right?)


Last night, was the first meeting since we've announced Holden's need for transplant. We were fortunate enough to be joined by the American Heart Association of Greater Orlando and adult CHD survivor Amanda Jean who shared her own story. I know the doctors and nurses are great at giving incite, but nothing beats the war stories like hearing it from the soldier themselves.

If you're a CHD survivor, parent, doctor, nurse, or support staff, join us sometime. We have refreshments! MMMmmm...refreshments!

The Tin Man's Heart Watch Day #9

Chillin bro. 

Holden demonstrates how to wait for a heart.

The Tin Man's Heart Watch Day #8

Holden made his return to the Orlando cardiologist today. When we last visited two weeks ago, we left believing that he would be staying in Gainesville for awhile and said our appropriate and emotional temporary good-byes. Well surprise, surprise when Holden came strolling into the office as if he'd just taken a mediocre two week sight-seeing vacation to Delaware.

It was absolutely amazing to hear everyone has been following his Facebook page and reading this blog. We always said we've been blessed to have so many great people showing us support throughout all of this. That group includes our family of doctors, nurses, and support staff at The Heart Center and the Pediatric Cardiology ICU at Arnold Palmer Hospital.

Holden might not enjoy the pulse ox readings, the weight checks, and he definitely wouldn't choose to partake in an EKG reading, but I know he feels comfortable around everyone over there. They make things really easy on him. Thank you!

And while you're at it, take a look at this picture of Holden next to our mosquito hive.

 

The Tin Man's Heart Watch Day #7

FEEL THAT HEMI BOSS.

Holden took his first ride on the always sleek and sophisticated 6 volt Batman automovehicle today.

We don't usually spoil him like this, but with all he has been through paired with his limited mobility, he deserved something like this. (Besides, we got the kid a FISH for his birthday. What parent proudly boasts getting their kid a Betta Fish? Oh wait...)

As the video illustrates he already rides the brakes less frequently than his mother and probably isn't much of a road rage threat. It's just funny to see him kick back and recklessly cruise around the yard (Did I mention he hasn't figured out he can steer said automovehicle yet?)

The Tin Man's Heart Watch Day #6

We tend to bite our nails during Gator football games. Holden assisted us in assuring that doesn't happen.

The Tin Man's Heart Watch Day #5

We haven't figured it out "why" yet, but Holden only likes to eat at joints that feature a salad bar. Home? Won't eat. Another person's house? I blame their cooking. A classy joint like a Ruth's Chris or a Captain D's? We don't even order for him anymore.

Throw a 20 feet long brass laden serving bar equipped with a sneeze guard in any of those places? He'll take on Joey Chestnut.

We took him to Sweet Tomatoes tonight just to watch him eat. The picture speaks for itself.