JJ's Journey

12/01/2025

With JJ’s most recent diagnosis of dysautonomia, he deals with not being able to keep his body warm at night especially the doctor has suggested taking extra measures to keep him warm. On his registry, there are several items that are needed for him. If anyone would like to purchase an item that would be great! Thank you for everyone’s prayers and support. We appreciate it very much!

If he gets too cold, he goes unresponsive and it’s extremely hard to get him warmed up and woken up again.

Check out this Gift List I created.

11/30/2025

JJ seems to be feeling a little better today. Just gotta keep him warm, do extra breathing treatments, his daily physical therapy, medications ,etc..

11/29/2025

Look at my perfect little boy, who is finally home!
Although not out of the woods with his pneumonia, atelectasis pseudomonas ( trCh infection) , and corona OG ( not Covid) .
The doctors added a new breathing treatment to help with his trach infection. He was also on antibiotics for his pneumonia. Please pray that he can continue to recover and be back to his normal Happy self soon! We are so thankful that he is finally home!

11/27/2025

Please keep praying for JJ. He has another infection in his trach. He’s also dealing with Rhinovirus, and Corona (OG, Not Covid) .  he’s been having high heart rates, high blood pressure, fever, and a lot of dystonia. He’s not feeling well at all.. I wish my baby was better for Thanksgiving….🥺🥺🥺💔💙🤒🤧

11/26/2025

JJ is being transferred to the PICU. He has pneumonia, and is breathing rapidly, also running a fever and needs 4 liters of oxygen, and ventilator support. He not feeling well. Please continue to pray for him.

11/24/2025

He’s finally asleep and stable,after all his meds and breathing treatments and .. he’s also on 2 liters of oxygen and back on the ventilator for now. Please pray for a restful night for him.

11/24/2025

JJ has been having increased seizures with his sickness. He just now had one that lasted about three minutes or so while his oxygen saturation went down to 62% and his pulse was up in the 190s. Very scary and we ended up having to put him on oxygen and suction in quite a bit ,till he was able to recover. These kind of seizures are really hard on his body and his brain.🥺💔🙏🏼 please pray for him💙🤒

11/24/2025

With JJ being sick, we up his breathing treatment regimen and also he got some time on the shaky plate to break up the extra secretions in his chest. He seemed to like it and it helped a lot.

11/23/2025

JJ is sick now, with a
102.7 degree fever, cough, lots of secretions and increased seizures… 🤧 🤒 please pray that we can manage his symptoms at home.

11/18/2025

I have to outlive my child.

I know it sounds dark.

It is dark.

But it’s my reality.

It’s the reality of most medically complex parents.

We don’t want to live forever.

We just want to live longer than our child.

We have to.

Because nobody else knows them the way we do.

No one else knows their sounds, their cues, or those tiny signals that mean something’s wrong.

No one else knows the meds, the machines or the day to day routines.

No one else knows them like we do.

We know how complicated their care is.

We know how easily the world would fail them.

They need us.
They need our love.
They need our level of care.

A world without my child should be my biggest fear,

But the truth is a world where he is without me is far more terrifying.

So…taking care of myself isn’t about self care.

It’s about survival.
Because I HAVE to be here.
For as long as I possibly can.

It’s a heavy thing to carry, loving someone so deeply that your biggest fear isn’t your own death… it’s dying before them.

This is, by far…the hardest reality I carry as a medically complex parent.

11/18/2025

JJ just had an appointment with his P*P and his newest diagnosis is Dysautonomia .

Dysautonomia is a condition caused by a dysfunction of the autonomic nervous system (ANS), which regulates involuntary bodily functions like heart rate, blood pressure, and digestion. Symptoms vary widely and can include dizziness, fainting, rapid or slow heart rate, fatigue, and gastrointestinal issues.

 otherwise the doctor seemed pleased with his current condition. She congratulated him on being off the ventilator.

11/17/2025