Hi everyone,

I wanted to share another update on Jude. It’s been a long road, and so many of you have continued to check in on him and support us. I’m incredibly grateful for that.

Since the last update, Jude had surgery to place a pacemaker. While the pacemaker itself is doing exactly what it’s supposed to and helping him tremendously, the recovery afterward was extremely difficult. Jude had a rare systemic inflammatory response that set him back quite a bit and halted a lot of the progress he had been making. After that, he went through a weeks-long ileus, where his intestines essentially stopped moving the way they should.

More recently, he had another surgical procedure to place something that will allow us to have more stable access for medications long-term. Unfortunately, that procedure also caused another setback in his recovery.

Right now, we’re working with his team to find a medication regimen that will allow Jude to safely go home. That’s been harder than we expected. We’ve already tried two options that didn’t work out, and insurance has made it difficult to access some medications that we know help him but aren’t easily, or at all, approved for use at home even with RN-level nursing care.

The hardest part lately has honestly been emotional. Jude understands more than most kids ever should about what his body has been through and the milestones he needs to reach before he can leave the hospital. The frustrating part is that many of those milestones are things he has absolutely no control over. He just wants to go home so badly. All of his care is centered around his quality of life, and even with this, decision- making and treatment is difficult.

There have been some bright spots. Jude has recently been able to start eating more by mouth again after switching to a new tube that’s used mainly for draining when needed. We celebrated with broccoli, his favorite food. He’s still not much of a drinker by mouth… but honestly, has he ever been? Haha.

The good news is that his pacemaker is working beautifully. In between the episodes his body still throws at him, Jude actually feels pretty great thanks to it. He also recently had the chance to talk with Make-A-Wish, which meant so much to him. I’m really hoping and praying that comes together for him. He deserves the world.

As for us, the reality is that with the level of care Jude needs and the constant ups and downs of hospital life, I haven’t been able to work with any consistency and likely won’t be able to in the near future. The bills, unfortunately, don’t pause the way life sometimes has to in situations like this. Our goal has always been the same: to get Jude home to a place that is not the ICU, and home to feel like home.

If you’ve supported us, shared Jude’s story, prayed, or even just checked in, please know how much it means. Truly. And if you feel comfortable sharing this fundraiser again, it helps more than you know. Jude continues to be unbelievably strong through all of this. I’m so proud of him.

Thank you for being here with us ❤️

I also want to apologize for being absent from messages and from checking in with many of you who have been thinking of and supporting us. Life inside the hospital can get overwhelming very quickly, and most of my time and energy, if not all, has been focused on Jude. Please be patient with me as I slowly start reconnecting and reaching back out to the people who have been lifting us up and walking alongside us during all of this. Your support has meant more than I can ever properly express.

-Chelsea & JG