Hi everyone! It has been a while since I’ve updated you all on Anthony. I felt in my heart that now is the right time to sit down and share where we are weight-wise. Anthony’s weight gain journey has not been easy.
If you’re new here, you can click here to read my previous posts about Anthony and learn more about his cystic fibrosis journey.
As many of you know, Anthony lives with both Cystic Fibrosis (CF) and ADHD. Managing these two conditions together is a daily balancing act with unexpected turns. School life, home life, and medical life are a lot to handle.
Sadly, over the last12 years, our biggest and most relentless battle has been the scale. CF weight ties into lung function. It directly correlates with lung function and overall resilience.
Getting Anthony to our target goal of 65 pounds has felt like climbing a mountain with a heavy pack.
We’ve had real victories on this weight-gain journey. Over the summer, we were practically glowing because we hit a major milestone of 63 pounds!
We celebrated, breathed a little sigh of relief, and felt like our hard work was finally paying off.
But as any parent navigating a chronic illness knows, a child’s weight gain journey is rarely a straight line.
Now that we are midway through October 2026, things aren’t looking quite as bright as we had hoped. I want to be completely open with you about where we are on our journey.
The Recent Setbacks on Anthony’s Weight
Despite Anthony’s absolute best efforts, his weight has slowly dwindled back down. Trust me, the boy can eat! Recently at his monthly CF health checkup, he weighed 60 pounds. It was a devastating blow to both Anthony and me, not to mention the CF team.
Experiencing a setback on this weight gain journey after coming so close to 65 is tough on a mama’s heart. We are looking closely at all the moving pieces to figure out why this is happening.
August brought a bumpy transition with the start of the new school year. We encountered several complications with the school cafeteria regarding Anthony’s medical diet forms.
On top of that, Anthony is naturally an incredibly active kid. He loves riding his bike to school every day despite it being a short ride from our house. His passion for participating in sports with friends keeps him constantly on the move!
While we love seeing him active, happy, and doing normal kid things, staying so active presents a unique hurdle on his weight gain journey. Anthony’s body is burning through calories faster than we can pump them in!
To make matters even more complicated, Anthony lives with a dairy allergy. Anyone in the CF community knows that a standard high-calorie CF journey relies heavily on dairy.
Fattening ingredients like whole milk, heavy cream, cheese, butter, and dairy-based oral supplements are usually the go-to tools for packing on weight.
When dairy is completely off the table, making progress becomes ten times harder.
Daily Routines & Fueling His Weight Gain Journey at Home
When it comes to supporting Anthony’s weight gain journey, my whole family is on board. We’ve tried so many different approaches, and over time, we’ve found a few staples that work for us (and plenty that didn’t!).
- The Chinese Food Win: Chinese food is a massive hit in our house because Anthony can eat almost everything on the menu without triggering his dairy allergy. It’s dense, savory, and a reliable way to keep his weight up moving forward.
- Homemade Hamburger Nights: We frequently do build-your-own burger nights with all the fixings, pairing high-protein, high-fat meats with sides he loves.
- The Trial & Error: We recently tried a new product called Whole Story Meals, which smells and tastes delicious! I was enthusiastic for Anthony to try this; we did. Unfortunately, it wasn’t a fit for us.
Nightly G-Tube Prep for Weight Gain Journey
Beyond daytime meals, Anthony gets overnight G-tube feedings every single night without fail to power his weight gain journey.
Adding extra calories to his liquid formula is a precise science in our kitchen! We currently add 12 full scoops of Duocal powder to his night routine.
Pro-Tip for Tube Feeding Families: If you’ve ever used Duocal on your child’s weight gain journey, you know how easily it can clump and clog the pump feeding tube!
Experimenting one night, I got an idea. I warmed up the formula with the powder in our high-powered blender and let it run on HIGH for a solid 60 to 90 seconds.
That thorough blend breaks down every single micro-clump so the pump runs flawlessly while Anthony sleeps.
Teamwork with Nemours & Overcoming Weight Hurdles at School
We are so grateful for our care team at Nemours Children’s Health in Lake Nona. We are currently doing monthly clinic visits to brainstorm every possible avenue for a healthy weight gain for Anthony.
One of our biggest hurdles early this semester was making sure Anthony was safely fed at school to support his weight gain journey.
Despite multiple warnings and medical documentation stating he cannot have dairy, he was offered dairy products in the lunch line several times.
For any parent or caregiver of a child with dairy allergies, seeing cheese-heavy items presented as the main option is a true nightmare.
Thankfully, our hospital dietitian at Nemours stepped in immediately! She advocated directly with the district to ensure Anthony now gets his very own prepped meal tray marked clearly with his name and dietary preferences.
Even better, she coordinated a high-calorie, dairy-free replacement meal plan that gives him the dense nutrition he actually needs to stay on track with his weight gain journey.
Looking Ahead: A Thanksgiving Tune-Up
Even with a combination of things, our Anthony can’t gain sufficient weight.
Things like:
- High-calorie meals
- G-tube feeds with 12 scoops of Duocal
- Almost two full years of daily Norditropin growth hormone shots without missing a single evening dose
Anthony’s overall growth and weight gain journey is still hindered. He simply isn’t growing or gaining weight the way his doctors expect him to, given the sheer volume of calories he receives every 24 hours (over 2,000)!
Because his body is burning through or failing to absorb this enormous amount of energy, we need a plan B. His Nemours team believes there is an underlying issue. Low-grade inflammation or an absorption block could be stalling his weight gain journey.
As a result, we’ve agreed to plan a hospitalization “tune-up” over Thanksgiving break next month to help get his weight gain journey back on track.
While nobody wants to spend time in the hospital, doing it during a school break minimizes disruptions for Anthony, and I fully agree with the doctors that it’s time to dig deeper.
During this stay, the medical team will run comprehensive evaluations. They will also administer IV therapies or targeted treatments if needed. This will give us a clearer picture of how to support his weight gain journey moving forward.
Final Thoughts & To My CF Community
Being a caregiver on a child’s weight gain journey is tough. When your child has medically complex needs, you learn to constantly adapt, learn, and stay resilient on tough days.
It is difficult when the numbers on the scale drop, although you and your child are doing everything you can.
Despite the tedious journey, Anthony remains in great spirits!
He loves his CF family at Nemours, his new school, riding his bike, playing piano, and being outside with his friends.
I will keep you all updated on how our Nemours visits go and what we learn from his upcoming Thanksgiving tune-up.
To my fellow CF parents, allergy mamas, and special needs caregivers:
How do you manage weight gain journey hurdles during busy school seasons?
What are your favorite high-calorie, dairy-free tricks to keep a weight gain journey moving forward?
I would love to read your stories in the comments below!
Thank you all for your endless love, prayers, and support for our sweet Anthony. I’ll see you all in the next post!
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With love,
Marlenny Linda
Marlenny Linda is more than just a writer; she's a passionate bilingual advocate for families with children with medical conditions. With a background in teaching English (TESOL/TEFL) and a Bachelor of Science in Liberal Arts, she crafts engaging, SEO-optimized content that informs, inspires, and connects with these families.
Her specialty is long-form content, where she dives deep into the topics that matter most, from navigating educational resources to fostering a fulfilling life for your child. Marlenny's innovative approach keeps audiences engaged and coming back for more.
