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Jun 22, 2022

Looking Back: Spencer

Written By: Jason
Spencer GBS 1 Resized 1

Looking Back

I started journaling 10 years ago to record my daily prayers and to force myself to “take pause” and reflect on what I’m thankful for. Journaling has grown my faith and provided me evidence of how God has moved in my life. I recently reread my prayers from 2012 when my then 12 year old son Spencer had extreme health challenges.

Spencer’s challenges began when he woke up and couldn’t move his face and all of his muscles were sore. My wife Dawn took him to the doctor for testing but they found nothing. He was taken to the ER later that week who referred us to a Pediatric Neurologist, but all tests came up negative! We met with another neurologist who thought he had Miller Fisher, a unique strand of Guillain-Barre (pronounced Gee-Yon-Bar-Ray). The doctor ordered a spinal tap, two intravenous immunoglobulin (iViG) treatments and scheduled a (very painful) Electromyography (EMG). The EMG showed that he was losing his reflexes and proved that he had a full-blown case of Guillain-Barre. He was still sent home!

Spencer couldn’t walk so he used a wheelchair and was getting so weak that swallowing food and talking was difficult. I ended up calling the on-call neurologist and he immediately sent us to the ER and they prepared a bed in the ICU. Spencer was given another five rounds of Plasmapheresis and after 13 days he showed amazing improvement! He was able to move his arms and even wiggle a toe! After 8 days at Marianjoy Rehabilitation Hospital in Wheaton, IL my wife noticed he was having trouble un- crossing his feet. He started to decline all over again and was re-admitted to the hospital ICU.

Spencer’s body didn’t respond to treatments so the doctors referred us to Children's Hospital in downtown Chicago. Spencer was put on life-support and remained intubated for 3 weeks! The doctors treated Spencer with bi-weekly iViG treatments and heavy doses of steroids. After 5 weeks in the ICU his body started to respond to the treatments and he was admitted to The Rehabilitation Institute of Chicago (RIC). Spencer spent another 6 weeks re-learning how to walk and do the basic activities of daily living.

Throughout our struggles I can honestly say that God was with our family. When Dawn and I stayed over at the hospital and the Ronald McDonald House, our friends stepped up and brought meals over and spent time with our children. Rallying around Spencer brought our family closer together and grew our faith. I will never stop looking back at how God helped us through 2012 and many other times during my life. I am more thankful than ever that we have a God who is always at work!

(Spencer joined more than 100 people in a Guillain-Barre/CIDP walk to raise money. It’s always great to see people come together to support a cause!)

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