09/08/2026
Let’s gather around and send Mav some positive energy and positive thoughts. We love you mad mav
Life with Maverick means our calendar is basically a full-time job. ❤️
Right now, he has three appointments every single week, two in Bellevue and one in Sandusky. And while we are so incredibly grateful for the doctors, nurses, therapists, and everyone who continues to care for him, there are weeks when we simply cannot be at every appointment with him.
That’s where family comes in. ❤️
We are SO thankful for the family members who are willing to drive him, sit with him, take notes, ask questions, and be there for him when we can’t. It truly takes a village, and we are blessed beyond words to have people who show up for Maverick.
One of the biggest challenges we continue to navigate is Maverick’s ARFID (Avoidant/Restrictive Food Intake Disorder) and eating disorder.
Maverick has been in and out of feeding therapy from the time he was 2 years old until he was 15. We tried. We worked on it. We went to therapy. We tried again.
And unfortunately, it just never budged.
ARFID affects so much more than what someone will or won’t eat. For Maverick, foods that were “safe” last week may suddenly not be safe today. Foods he could tolerate can suddenly become impossible. And when you already have a body that is medically complicated and dependent on very carefully balanced medications, nutrition becomes even more important.
Friday was a perfect example of just how much his eating disorder and nutrition can affect everything else.
His blood work came back extremely out of range.
His INR was 5.8 and his PT was 55.5.
For reference, his INR goal is much lower than that.
So what does that actually mean?
INR is basically a number that tells us how long it is taking his blood to clot while he is taking his blood thinner. The higher the INR, the longer it takes to clot, which means his blood is too “thin” and his bleeding risk is higher.
PT is another way of measuring how long it takes the blood to clot. His PT being 55.5 means his blood was taking significantly longer than normal to form a clot.
As soon as that lab alert hit my phone, I knew the doctors would be calling.
Sure enough… two minutes later, Cleveland Clinic was calling.
His cardiologist instructed him to take it easy and do nothing but hang out at home for the weekend. He was also instructed to skip a day of his medication.
Then the pharmacist called with his new dosing instructions for this week.
And now?
He needs labs twice this week, on top of his two appointments in Bellevue.
This is the part of Maverick’s journey that can be hard to explain to people.
His body is extremely sensitive to even small changes. Something that may seem insignificant to someone else a change in what he is able to eat, how much he is eating, or how his nutrition changes from week to week can have a much bigger impact on his medications and his blood levels.
His warfarin dosing has to be carefully adjusted because we are constantly trying to find that very narrow sweet spot where his blood is not clotting too easily, but also isn’t taking too long to clot.
And when his nutrition is unpredictable because of ARFID, keeping that balance can become incredibly difficult.
So while we continue waiting for a heart and hoping that transplant day comes sooner rather than later, we keep doing what we have always done:
One appointment. One lab. One medication adjustment. One day at a time.
And we are incredibly grateful for every person who helps carry Maverick, and us, through it. ❤️
