Cystic Fibrosis Care: Update Post on Anthony!

Hello everyone! This cystic fibrosis care update is to let you know how Anthony has been doing recently. 

It has been quite a journey these past 12 years. Anthony turns 12 next month on April 15th, and while I won’t say everything is perfect, we are incredibly grateful that solutions exist. 

Between pulmonology, nutrition, allergy visits, and endocrinology, a lot has been happening. 

The weight gain battle has not been getting easier, and we are struggling to get past 56 pounds. Anthony is still below the 50th percentile, and things do not seem to be getting better for him.

His lungs are also showing a slight decline, which worries me because we all know that when this happens, it can be fatal.

Here is the latest on our world of cystic fibrosis care.

The Weight Gain Battle: Pulmonology and Nutrition 

Our recent visits to the pulmonologist are always a learning experience.

Currently, Anthony’s weight is holding at 56 pounds. He isn’t gaining as we hoped, so we are pulling out all the stops.

To boost his intake, we are making Dominican-inspired homemade oatmeal shakes blended with the Kate Farms formula he was prescribed.

I will be posting about this shake in a few weeks from this post, so stay tuned! Our nutritionist has been a godsend, helping us brainstorm ways to avoid a “tune-up” this summer. 

Both Anthony and I struggle with anxiety, and we know how stressful a long hospital stay can be. The last hospital visit went well until we reached week one of our stay.

The days felt so long, and I grew so anxious upon being in that room with him and seeing that almost everything on the menu contained dairy.

There were few options for Anthony, which led my anxiety to peak!

I am determined to keep him healthy and at home!

Lung Function, Cystic Fibrosis Care, and the School Lunch Struggle 

Anthony’s recent lung function test showed a slight decline. The doctors believe this is tied directly to his weight. It’s a battle we are fighting together—drinking our shakes and loading up on potatoes and pasta!

We also hit a snag at school; they originally refused to give him double entrées, which certainly didn’t help his weight. 

Thankfully, the nutritionist sent a formal order to the school to fix this. We also caught a slip-up with his enzymes—I realized I was looking at the wrong expiration date on the jar! 

Let me explain: On the jar, there is a date that is 1 year from now. I gave one to the school nurse and had a few of these jars at home. 

The school nurse apologized, but I told her I was at fault for this error and that I would bring her a fresh one soon.

I’ve now learned always to check the prescription label for the true date.

With fresh enzymes and extra school lunches, I’m hopeful for a better report at our April 29th visit to Nemours.

Career Transition: From Online Teaching to Nursing 

In the midst of all this, I’ve made a big career move. I am transitioning from online teaching back into nursing as a CNA.

I recently passed the state exam in Florida, just as I did 15 years ago in January, and became a Certified Nursing Assistant once again!

However, being 19 and inexperienced made the job extremely overwhelming for me in a nursing home setting. Morning shifts on the weekends from 6 a.m. to 3 p.m. were a nightmare! 

Now that I have passed the state exam again, I am working in a home health care setting, giving one-on-one care for each client. Much better and no stress!

I went back to school and began my teaching career online after Anthony was born. 

While I loved teaching, the online market has been declining, and the flexibility of home health allows me to be there for Anthony when he gets out of school. 

Plus, if he ever needs to be hospitalized, my background in cystic fibrosis care and clinical experience ensures I can provide him with the best oversight possible. 

It’s a stressful shift, but I’m doing this to create a more stable future for us.

Managing Nightly Challenges and Modulators 

Anthony has been struggling with nightly bed-wetting and frequent bathroom trips. An X-ray revealed this was actually due to constipation. 

I felt like I was working in a laundry for the past 3 months and felt hopeless, even with the ninjamas (which you can read about here). Unfortunately, he was still wetting his underpads and blanket.

The adult soak-proof underpads have helped keep his bedding dry, and I am grateful for that.

I’ve adjusted his regimen to include two caps of Miralax daily in room-temperature apple juice or Gatorade.

I have also been having trouble getting Anthony to take his daily Sena capsule, which would prevent all these constipation and bed wetting problems.

On the medication front, we recently switched from Trikafta to Alyktref. While the once-a-day dosing is much easier, I have noticed Anthony seems a bit more jittery and compulsive. 

We are keeping a close eye on his behavior while the medication works to thin that mucus and help his lungs.

With proper cystic fibrosis care, I know he will be fine and using the bathroom more than once or twice daily.

Endocrinology and Growth Therapy 

Anthony has been on Norditropin growth hormone therapy for over a year. 

While his growth isn’t quite where we want it yet, his dosage was recently increased to 1.4 mg. We are so thankful he hasn’t had any side effects such as joint pain, headaches, or swelling. 

We have also been very careful where he injects by keeping a color-coded chart. Each color represents a place for injection, which has been helpful to Anthony. 

As his doctor says, “We aren’t out of the woods yet,” but we are staying prayerful that this increase helps him finally reach that 50th percentile.

Growth hormone takes time, but the results are positive for children with growth deficiency.

Tackling New Allergies 

As if CF wasn’t enough, an allergy test in January revealed Anthony is allergic to dust mites and dogs. 

Thankfully, he is not allergic to our cat Gadget. Although Gadget is mainly an outdoor and backporch kitty, I take precautions and vacuum the backporch, wash the sheet Gadget lies on the couch, and dust the porch regularly. 

I also mop the back porch to ensure a neat environment for both Anthony and Gadget.

2 months ago, I began deep-cleaning for dust and installing special bedding and pillow encasements.

He is also strictly dairy-free (which means no chocolate, unfortunately!). 

Chocolate has milk and causes Anthony to have an itchy tongue.

Thankfully, with all of the things I have been trying on dairy-free nutrition, things have been looking up.

We’ve swapped to Califia Farms Oat Milk, which is a great source of Vitamin D. 

If you want to see my full guide on managing dust mite allergies, [click here] to read my latest post!

Moving Forward: School Advocacy and Hope 

Public middle school has been a rollercoaster. Between a recent heat stroke at school and a decline in his grades, Anthony has had the same results at every school he has attended. 

He does not qualify for an IEP plan because his test scores have been exceptional. On his reading exam, he scored a level 4, which is outstanding. 

Receiving complaints from the Dean and teachers is sadly something I have become accustomed to. In elementary school, the results were the same. 

His current school is working with him and is trying to help Anthony with everything they have to keep him out of detention.

The school nurse has been very good with his cystic fibrosis care plan, and I like that the school is close by.

When he was younger, I switched him from Hidden Oaks Elementary to a wonderful elementary school called Chickasaw Elementary, which is sadly closing down this year, 2026. 

Anthony’s defiant nature has led to his decline in grades and conduct. I’ll keep you updated on his school performance as he ages. We tried homeschool, but Anthony decided to game online versus complete his assignments. 

Along with his cystic fibrosis care, 2 weeks of homeschooling were enough for me to realize that he would not excel at home and needed peer-to-peer interactions.

Recently, the phone he had, which his paternal grandmother got him, had to be mailed back to her due to these issues. He took his phone to school without my permission and recorded some interesting footage about his day. 

He was very inattentive and basically was the class clown, hiding under desks, bothering others, being inappropriate, and seeking attention from peers.

Conclusion

It is exhausting managing this “silent illness” on my own, and while my mother helps when she can, the weight of it is heavy.

But we aren’t giving up! I hope sharing our journey with cystic fibrosis care helps other parents feel less alone.

Stay prayed up and vigilant.

Until next time,

M. Linda