Happy Fontanniversary, Corey!

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Can’t find a chair? Just hop in the trunk.

This is Corey’s 6th Fontanniversary. We are 6 years post-op! And he’s 10 – how did that happen? It’s also my Grandma Anne’s 92nd birthday. My other grandmother, Fran, is about to reach her 93rd birthday next month. Damian’s Grandma Jeanne just hit 93. So basically I’m surrounded by a bunch of willful, stubborn people who just plan to keep right on living indefinitely. Corey came into the world that way – I guess he came by these traits honestly. I’m so glad he did.

How is the heart child doing 6 years after the Fontan? Kicking butt and taking names, that’s how. It’s baseball season, and he plays catcher on defense, a role he loves, because the catcher is involved in all the plays. And, just like everything else Corey does, he’s all-in or he’s not in at all. His speeds are “on” and “off” – nothing in between. This is absolutely inspiring and utterly exhausting.

In school, his grades are As and Bs. More As than Bs, and his Maryland State Assessment test scores for math were off the charts. He creamed everybody. In his school, in his county, even in his state. His dad’s got a master’s in math, though, and I used to tutor college algebra and calculus, so again – good genes. (See what I did there? I just tooted Damian’s horn, Corey’s horn, and my horn too. Toot toot!) Also, through school, he plays the violin, and he loves it. And he’s good at it.

There is no Rubik’s cube that Corey can’t solve!

Yes that statement requires its own paragraph. Let’s see, what else? Oh! We are teaching him to play poker – Texas Hold’em. The Easter Bunny picked him up a set of cards and chips – given his proclivity for math and his luck at cards (his Uncle Dave used to be a professional poker player, so clearly this is genetics again!), we think he could have a smashing good time at this. We plan to get some lessons from his uncle when we visit him in California this year.

Anyway, in summary, the kid has exceeded all our expectations. We hoped he’d be somewhere on the spectrum of normal and quasi-intelligent, but he’s turned out to be a brilliant little being. He’s my miracle. Today and always.

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An Update on the Heart Child

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Friends and family know that the heart child, Corey, is nine years old now and doing remarkably well, but for new people surfing in to “meet” my little source of inspiration, I thought it might be time to write an update.

Corey’s in fourth grade, five years post-Fontan, and in the 62nd percentile for height, 50th for weight. He’s huge! He eats more food than I do at any one sitting. When he’s a teenager, I’ll have to hit Costco and buy six chickens at a time. And not to brag, but he’s wicked smart. Ridiculously smart. Okay, so I mean to brag. He’s so smart! Let me give you some examples of his cerebral prowess.

1. He watched videos on youtube and taught himself to solve the Rubik’s Cube. He can now solve any traditional 3×3 Rubik’s Cube in a matter of mere minutes.

2. When he took the state assessment test in his elementary school, his results in math were off the charts. He scored well above not only the kids in his school, but all the kids in the county AND the state.

3. His last report card was straight As.

4. He has an affinity for cards, picking up new games and winning at them so quickly that I am afraid to expose him to his Uncle Dave, who was once a professional poker player, because if Corey picks up poker like he picks up everything else, look out! We’ll be mortgaging the house to pay off his gambling debts before he’s 10. Or buying a vacation house in the Keys. Could go either way.

5. He beats me at Monopoly regularly, and I don’t let him win.

That’s enough about Corey’s brain. It’s a great relief, I must say, for his parents. When he was diagnosed with a single ventricle in utero, we wondered if he would be below average. Or well below average. Or worse. When our PC said, “If he is meant to be an above-average student, he will be, regardless of his heart,” he was right!

Corey also plays baseball. And well. Soccer is out – too much running – but he’s got rockin’ hand/eye coordination, and those brains of his come in handy. You need brains to play baseball. Luckily I don’t need brains to watch him play. I just need beer and peanuts. Just kidding. About the peanuts. These kids might have a nut allergy! I would never expose them to peanuts. Ahem.

Right now Corey (and his heart-healthy younger brother) is all excited for the holidays. We will be bringing out our Halloween decorations today! And I am feeling the boys’ excitement. The 10th anniversary of Corey’s diagnosis is this month, and when that day passes, and I mark it (as I always do), it will be with a giant smile on my face as I watch my amazing heart child play with our Halloween toys and talk non-stop about wearing his costume, trick-or-treating, marching in the holiday parade, going to Aunt Vicki’s for Thanksgiving, seeing Super Magic Elf (or Elf on the Shelf) again, what he’s going to write in his letter to Santa, when we’re going to get the Christmas tree, whether or not Mommy is going to forget the carrots for the reindeer again……..

The Fontan – the final surgery in the reconstructive pathway.

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This is (hopefully) the last graphic picture I have to post, because (hopefully) the Fontan was Corey’s final surgery. Every year, on April 21, we celebrate Corey’s Fontanniversary. The anniversary of the day he had his Fontan surgery, April 21, 2009. The last surgery in the three-stage reconstructive pathway. We waited for the Fontan for years. All the time that we waited, I felt a fog of fear drifting over me. I tried to push it away and live my life with Corey, enjoying the time we had together, but it was always there.

Handing Corey over for surgery was extremely difficult every time. With the B-T shunt and the Glenn, he was a baby. That was awful – he was so small and helpless. But the Fontan brought a new set of challenges, because by then Corey was a four-year-old child. He walked, he talked, he asked questions, and he felt fear. We had to figure out how to get him through without scaring him. We had to feel our fear and hide it from him. It was a whole new ballgame.

April 21st came, and Corey had his Fontan. We hoped it would be a textbook event, as the previous surgeries had essentially been. It wasn’t. In the wee hours of the morning on April 22, the PICU staff discovered that Corey was bleeding internally. He had to go back to the OR. It’s one of the few times I’ve seen my husband truly terrified. Up to that point, Corey was on the path. But at that moment, he was off the path. Back to the OR he went for emergency surgery. And thankfully, he came through.

On April 28, 2009, the fog of fear that was with me for so many years finally lifted, and we brought Corey home. He was pink. So pink! His oxygen saturation levels were at a record high in the upper 90s. His energy level went through the roof! And there it has remained to this day. We did it!