07/13/2026
So I haven't made a post in while.
I technically shut down last year, due to family related issues. Here's a little update:
ALWAYS REMAIN HOPEFUL!
Our feel good story. Kinda long sorry. Pic from our time at SLCH
A year ago next week, my youngest son developed symptoms of paralysis.
He complained his legs hurt one night and I treated him for growing pains. He seemed achy but okay the next day until the night. I grew worried and said Id take him to the doctor the following day...growing pains dont work like that.
The following morning he couldnt walk. I rushed him to Rolla where they realized very quickly he had no reflexes in his legs and they had him rushed to Saint Louis Childens Hospital in STL.
They did an MRI and found lesions along his spinal cord and one in this brain. He was admitted right away into PICU.
5 weeks later we found out it was due to a rare symptom of West Nile Virus attacking his spinal cord and brain and subsequently he had a rare autoimmune response that did the same.
It kept traveling up that first week. I could see him look at his hands like what's wrong...but he refused to admit it. I noticed though. Ultimately, after steroids and IV therapy he was paralyzed from the naval down.
His 2nd MRI, just before 5 wks, didnt look good to the doctors. But I saw him, granted involuntarily, flex his foot in the shower at wk 5. I was told to hold onto my hope no matter what but stay realistic with the findings. A week before we left the hospital he started moving his feet and they worked hard with what they were getting from his body. He had just barely learned to crawl before we left.
He went through a lot at just 7yrs old. 3 hrs of extensive physical and occupational therapy everyday for weeks to learn upper body independence and such; except Saturdays for family.
He was discharged after almost 7 wks with a new wheelchair. I stayed the entire time at the hospital. I couldn't leave him alone. Dad took care of the kids at home and they visited on Saturdays.
He had so many treatments. IV therapy and plasma replacement. So many appointments. So much growth and resilience.
It will be 1 year on the 14th since I first noticed something was going on with him.
He had an MRI today and I'm thankful to say, he IS recovering. His lesions are recovering. He walks with a walker but can ride his bike again. He wears braces on his legs to help keep his legs in position but....he is walking. They didn't think it was ever possible. And they are hopeful over time for a full recovery, if not close, with more physical therapy and training.
I am so thankful for this blessing. ALL the staff at SLCH is amazing. We both made friends in the cafeteria, his neuro floor and all throughout the building!
Keep hope alive. Sometimes it's all any of us have left.
