Archive for April, 2017

Rest for the Weary

Earlier this week Ari got a visit from NHL all star Nick Foligno of the Columbus Blue Jackets. Biggest smiles we had in a long time! Ari loves his NHL and his friend Nick. Photo used with permission.

On Thursday morning just before noon we had a great baseball session in bed with Ari. He was getting stronger, sitting up in bed, and in a great mood. He was the catcher and umpire, putting down signs for pitches: 4 for the changeup, 3 for the curve, and 2 for the slider. Of course all the pitches were strikes. Erica was up. She said, “Ari, that one was outside.”

According to him, “No! It was right across the plate.” When he was up, he got a hit and said, “I need a pinch runner.” Ari’s primary cardiologist walked in just in time to oblige and play for a bit. She asked Ari what day it was. He said, “It’s karate chop day!” Next she asked, “When can it be kissing day?” He said, “Not until I’m older, so it’s karate chop day.”

Then she asked us to step outside to talk.

By 12:30 p.m. Ari was heavily sedated and placed back on the breathing tube.


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The point of this post is to ask you to go here https://echoofhope.org/100klives/ and help out. If you do this but don’t read the rest of the post I’ll be sad, but I’ll get over it.

When millions of people saw Ari’s video as it went viral the day of his transplant we were immediately flooded with media inquiries. For two reasons we still have not spoken to any press yet. First, we were (and are) focused on Ari. Second, we are sensitive to the fact that a family had lost a child, and yet, during a time of immense grief, chose to give the gift of life.

We didn’t feel comfortable speaking with anyone.

In the few minutes we talked to each other about it, we asked ourselves, “If we have 15 minutes of fame, what do we want to do with it?” We didn’t have an answer.

We do now.

We are going to try to save 100,000 lives.

And when I say we, I mean you! We need help from all of you. Keep reading to find out how. (more…)

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We post this picture of Ari to raise awareness for the need for people to register as organ donors during #DonateLifeMonth. Approximately 300 pediatric heart transplants are performed each year. Too many children don’t survive the wait. Register here: #DonateLife.

Earlier this week Ari’s blood pressure was regularly bottoming out. By 10 a.m. Tuesday his systolic pressure had dipped into the 30s. I told Erica on the phone. She said, “Is this it? Should I rush in?”

Ari was struggling mightily. So much so the doctors had the conversation with us about how Ari wouldn’t survive CPR and ECMO again. Those are off the table. He needs to keep it together. Last of the 9 lives. Gunfight at the O.K. Corral.

Then, as he has done so often in his short life, he dug in and attacked, pressing the enemy with great fury and relentless determination.



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