JJ's Journey

11/17/2025

11/15/2025

JJ‘s epileptologist said that there’s a possibility that JJ’s unresponsiveness, low heart rate, and low blood pressure could’ve been due to :
autonomic instability,
also known as autonomic dysfunction or dysautonomia, is a condition where the autonomic nervous system doesn't function properly, affecting involuntary bodily functions like heart rate, blood pressure, and digestion. This can lead to various symptoms, such as dizziness, fainting, and fatigue, and can be caused by a wide range of underlying conditions .

Or possibly status epilepticus .

Non-convulsive status epilepticus (NCSE): Occurs with prolonged electrical seizure activity but without obvious physical convulsions. Symptoms include changes in mental status, confusion, or lack of responsiveness.
We really wish for more conclusive answers so we could figure out a better treatment plan going forward for him. He is scheduled to have a vagal nerve stimulator (VNS )
Implanted on December 11. This is a device that connects to his vagus nerve and has a magnet that can be activated if he’s seizing. This is supposed to help block signals to his brain to stop and control seizures. We are hoping and praying that this helps him overall. Lord willing we will be able to wean him off of some of the other seizure medication that he’s on eventually.
Vagus Nerve Stimulation: An implantable device similar to a pacemaker that delivers electrical impulses to the brain via the vagus nerve.
Primary uses: Approved to treat epilepsy and treatment-resistant depression.
How it works: It is programmed to reduce seizure frequency and severity.

11/14/2025

My son is nonverbal, but he can hear you.

Being nonverbal doesn’t mean someone can’t hear you or understand you. Many nonverbal people are fully aware of what’s happening around them—they hear every word, notice every expression, and feel every tone.

The absence of spoken words doesn’t equal an absence of thoughts, emotions, or understanding. Communication takes many forms: gestures, facial expressions, writing, technology, or simply presence.

Speaking about someone as if they can’t hear, or assuming they aren’t listening, can be deeply hurtful. Respect means recognizing that listening and understanding are not limited to speech, and that every person deserves to be spoken to—not just about.

Just because he cannot speak, doesn’t mean he cannot hear or understand you.

Nonverbal does not mean non understanding.

11/12/2025

Please pray for JJ, and that we can find some answers as to why he’s not doing well.

11/12/2025

‼️ EVERYONE PLEASE PRAY FOR JJ. SOMETHING IS WRONG …‼️

11/10/2025

Please pray that JJ‘s sleep study will go smoothly and that he will pass with flying colors! This will be a huge step in a good direction that we have been praying for a long time! He will be put on lots of monitors all over his head and body and be closely monitored overnight while he sleeps without his ventilator. Please just pray that everything goes well. I’m anxious. He seems very content and happy! It’s just him and I here at the hospital and daddy has SISTER at home!

11/07/2025

We brought JJ home last night a little after 4 AM and he seems to be doing well.

11/07/2025

2:30 AM - Had a scare with JJ tonight.. change of medications didn’t go great and he was experiencing some unsettling and potentially dangerous withdrawal symptoms. Had to call 911 and have him transported to the hospital for monitoring and they’re giving him medication‘s That are helping everything get leveled out and he’s being monitored and should be able to go home in the next several hours possibly. I’m just sitting here with him waiting for him to feel better.

11/04/2025

Surviving marriage while raising a medically complex child?

People don’t talk about it enough.

Marriage is hard.
Parenting is hard.
But parenting a medically complex child together?

It can feel like you’re trying to hold hands in a hurricane.

It changes you.
Both of you.
Individually and as a couple.

You don’t get to argue about who forgot to switch the laundry.

You’re too busy remembering seizure meds, schedules, insurance calls, and when your child’s next feed is.

You don’t get date nights.

You get hospital nights, where one of you sleeps upright in a chair and the other is at home, praying the phone doesn’t ring with bad news.

You miss each other… even when you’re sitting in the same room.

One of you becomes the researcher.
One becomes the protector.
One runs on logic, the other on emotion.
Sometimes those roles switch.
Sometimes you’re both drowning at once.

Some days, survival is the only goal.

But here’s the part that matters…

You find each other in the cracks,

in the late-night hallway hugs after bad news,

in the shared look over your child’s hospital bed and in the small “I grabbed your favourite hospital snacks” gestures.

You begin to rebuild something deeper than what existed before.

Not the same marriage.
A stronger one.
A softer one.
A marriage rooted in teamwork, battle scars, and a love that has been tested but persevered.

You are not failing.
You are navigating the unknown together.

This is your “for better or for worse.”

Written by: Carla Moore from Payton's Path

11/04/2025

JJ enjoys tummy time. He likes to nap and look around. It also helps alleviate some of his dystonia episodes.

11/04/2025

Check out this Gift List I created for things that JJ needs.

11/03/2025