John’s most recent surgery was in September, and we initially felt it was a great success. Unfortunately, we’ve seen a steady decline over the last few months which prompted the appointments today. This decline is something we’re familiar with, as we’ve seen it many times and this is a road we’re familiar with. John’s ability to drink a bottle, take a pacifier, sleep, and our ability to suction and keep his airway open have been increasingly difficult since September. 

 

John saw both his plastic surgeon and ENT doctors and we did not receive the news we’d hoped. Instead, it feels like our hopes have been crushed. 

 

 

Since John was diagnosed, we were always told this was something he would grow out of. Most kids grow out of this issue and go about their life in a mostly normal manner. Our goal has always been growth, because that’s the ONE thing that could fix the problems. All he needed was to be bigger so his airway could be bigger. It’s the one thing that has kept us going, it’s what we’ve held onto on the worst days, through all the hospital stays and uncertainty, and it justified the tens of thousands of dollars in medical debt. It’s been our motivator and our ultimate finish line. We lost that today. 

 

We unfortunately have to accept that John will NEVER grow out of his breathing problems. No amount of growing will fix his nose. At this stage, we’re out of curative surgical options. The damage to his nasal airway is so extensive that the doctor could barely identify what he was looking at. He has very little clearance left in his nose for air to move in and out and any bad cold would be detrimental. Our worst fear of him needed a trach is still a possibility. 

 

His nasal septum is half gone, and the half that still exists is so mangled it is functionally useless. This will affect the way his nose grows and likely will leave him with noticeable cosmetic issues. 

 

Only some of these issues can be fixed, in part, and can only be fixed when he’s nearly grown and well into adolescence. 

 

A silver lining- His nose breathing is only an issue when he’s eating or sleeping. He defaults to nose breathing when he’s sleeps so this has made sleeping very difficult for him. During the day when he’s playing and awake, he breaths through his mouth without issue. Eventually, he will learn to ONLY breathe through his mouth, even when sleeping, but that could be in 6 months or 2 years. 

 

Another silver lining- he still really struggles to drink a bottle since his nose is mostly obstructed. However, he turns 1 soon and can mostly rely on real food- which he LOVES and has no issue eating. 

 

Although we’re extremely disheartened by the news today, he’s still our happy, growing boy and we will continue to pray and fight for him. 

 

John will be headed back for a quick surgery where they put a balloon in his nose to try to open up what tiny airway he does have. This should be outpatient and we hope it comes without complications. This will probably happen over the next few weeks and we hope it doesn’t conflict with our plans to celebrate his first birthday. 

 

It’s a tough pill to swallow for us that a journey we hoped and prayed was nearing its end is actually just beginning. It’s amazing to see all his growth and accomplishments over the past year and I could write a novel about all the things our family has seen felt and been through since he was born. 

His fight is far from over and we will continue to rely on each other and those that love and care about us and John to help keep us moving forward. 

 

Today was a good day for him, and we pray for many more of those. This isn’t the start to 2026 that we hoped for, but here’s to another year of defying the odds and supporting our LJ. 🫶🏼