Every parent wants to protect their child from pain, from fear, from uncertainty—but sometimes life hands us challenges that no preparation can soften. Our boy is facing one of those battles every single day, and watching him fight so hard is both awe-inspiring and heartbreakingly difficult. His oxygen levels have been fluctuating dramatically, a constant reminder of the delicate balance his body must maintain. The doctors explain that this is expected as he begins to outgrow his shunt, but as parents, seeing him struggle with each breath pierces the heart in ways words can hardly capture.
Even with reassurances that there is no immediate danger, the ache in our hearts is undeniable. Every labored breath, every slight pause in his rhythm, makes us hold our collective breath along with him. Yet amidst the fear, there is awe at his resilience—a tiny fighter whose strength belies his size, whose courage inspires everyone around him.
The coming days carry more challenges, with procedures that weigh heavily on our minds. On October 24th, he will undergo a catheterization and MRI to determine if he is ready for the Glenn procedure—the next critical step in his journey. This means he will need to be fully intubated and placed under anesthesia, a thought that tightens the chest and quickens the pulse of anyone who loves him. We ask, with every fiber of our being, for prayers—for his safety during these procedures, for the skilled hands of the medical team, and most of all, for the strength and resilience he will need to face this next chapter.
Even small interventions, like a recent blood transfusion meant to boost his oxygen levels, have not fully resolved the challenge. Every ounce of his tiny body’s strength is concentrated on staying stable, conserving energy, and preparing for the next critical step in his treatment. It’s a reminder that each day is a battle, each breath a victory, and every small sign of stability a reason to be grateful.
What sustains us through these long days and nights is the unshakable love and support from friends, family, and strangers alike. To every single person who has prayed for him, sent messages of encouragement, donated to his care, or simply reminded us that we are not alone—you are the reason we continue to stand. Your love lifts us when we are weary, steadies our hearts when the fear feels overwhelming, and surrounds our boy with a network of care that reaches far beyond our immediate family.
Even in the midst of this exhausting fight, our son teaches us daily about courage, perseverance, and hope. He may be small, but his spirit is vast. He faces every challenge with determination, never giving in to fear, never allowing the weight of his condition to diminish his light. And in turn, he gives back to all of us a lesson in resilience that is as humbling as it is inspiring.
As we count down the days to the Glenn procedure, we cling to hope and prayer. We hold onto the moments of laughter, the glimmers of curiosity and play, and the tiny victories that remind us he is still a child with joy to give, even amidst medical trials. Each step forward, no matter how small, is a triumph; each challenge met is a testament to his incredible will.
We are asking, once again, for strength, for protection, and for healing. Pray for his courage, for his safety, for the medical team guiding his care, and for the resilience of all of us who love him deeply. This journey is not easy, but it is made bearable by the love that surrounds him—from our hearts, and from every single person who walks alongside us in this fight.
Our boy is fighting with everything he has. And with every prayer, every word of encouragement, and every ounce of love sent his way, we believe he will face the next step with the same extraordinary courage that has brought him this far. 💙🙏