It’s been a busy few days for our family, but we wanted to take a moment to share how little Theo has been doing. The weekend was full — of challenges, progress, and small but meaningful victories that remind us why we keep pushing forward.
Friday’s Special Moment
Friday was a heartwarming day: Toby visited and got to pick up Theo all by himself for the very first time. It was a simple moment — a dad holding his son — but it carried so much emotion. After everything Theo has been through, that cuddle session between father and son was exactly what both of them needed. 🥹
Healing Challenges and Care Updates
Theo has been doing well overall, but on Thursday we noticed that some of the skin on the left side of his stoma wasn’t healing quite as it should. (For those unfamiliar, a
stoma is a surgically created opening — in Theo’s case, for his trach.) The ENT team came by to take a look and prescribed Ciprodex drops to apply at every trach care session.
We’ve also switched to a different kind of padding that contains silver, which should help promote faster healing. It’s always a balance between vigilance and patience, but every small adjustment makes a difference.
Big Milestone: No More IV Nutrition!
This weekend brought one of the biggest milestones yet — Theo’s IV nutrition was discontinued! 🎉 He’s been on IV nutrition since arriving at Texas Children’s Hospital back in
July, so this is a huge step forward.
To support his transition, the team added oral potassium supplements to help keep his levels balanced. Now we just need one last thing — for Theo to
poop! It’s been a few days, which the team believes is due to his sedation medications (he’s currently on three). They’ve added stool softeners and Miralax as needed to help things move along.
Slow and Steady Progress
Theo’s morphine drip has been decreased slightly as part of a carefully structured wean protocol designed specifically for him. Because he’s been on sedatives for such a long time, we have to go slow and gentle to protect his system. The
pharmacy team has been incredible in tailoring this plan for our little fighter.
And another big step — the midline in Theo’s right arm, which was used for his Bumex drip,
came out today! That means one less tube, one less line, and a little more freedom for our boy.
To keep that line open while they waited to remove it, the team had been running a slow
Heparin drip (called a “TKO line”). Now that it’s out, Theo doesn’t need that extra fluid anymore. Less fluid means more room to increase his feeds — another quiet but meaningful victory. 😌
A Busy Weekend Outside the Hospital
Outside of Theo’s care, our weekend was a whirlwind. We kicked things off early Saturday morning with a garage sale
Later that day, my best friend called needing help with her wedding service business, and of course, I couldn’t say no. Between hospital visits, the garage sale, and helping out with her event, it was an exhausting weekend — but a fulfilling one.
Amid the busyness, we’re taking time to celebrate the small wins. Theo’s off IV nutrition, his midline is out, and his feeds are going up. His healing may not be perfect, but it’s happening — slowly, beautifully, and in its own time.
Gratitude Always
To everyone who reached out asking for updates — thank you. We know it’s been a few days since the last one, but your love, patience, and constant prayers mean the world to us.
Theo is making progress. He’s resting, healing, and teaching us daily about strength, faith, and perseverance. We’re so proud of him — our little warrior, our bright light.
Please keep the prayers coming as we move forward, one hopeful day at a time. 💛
Maksiu: A Warrior’s Journey of Hope and Determination
In a world where strength and resilience are often measured by physical endurance, Maksiu shows us every day that true power lies in the spirit. Our beloved son, though battling the severe and incurable genetic disease
cystic fibrosis, teaches us daily about the strength of life and the unyielding power of determination. Even in the face of unimaginable challenges, Maksiu remains an unwavering warrior, navigating each trial with a smile and an unbreakable resolve to find happiness.
From the very beginning, our journey with Maksiu was marked by uncertainty and fear. At just 26 weeks of pregnancy, early signs of abnormalities in his intestinal structure were detected. Despite consulting numerous specialists across the country, no one could offer a definitive diagnosis. This should have been a time of joyous anticipation, yet instead, we found ourselves consumed by worry, as we faced an uncertain future for our son. The day of his birth, unfortunately, brought no relief but only more challenges to face.
A Fight for Survival
