Today begins my grandson James's miracle journey to a "vertical' life! Being born premature at 33 weeks on Oct. 7th, James was in the NICU for almost the entire month of October 2008. Our little pumpkin came home Oct.31st. Being a special education educator for 27 yrs. at the time, it didn't take long for Mary Ellen and me to determine James was not meeting milestones. We knew in our heart of hearts, something wasn't right and began searching for a diagnosis. No one in the medical community wanted to label James and especially didn't want to suggest Cerebral Palsy. In fact, one physician told my daughter,
"James is just a wimpy little white boy."
Fast forward 2 1/2 yrs and hundreds of Dr. visits/therapies later, James does indeed have Cerebral Palsy and is about to have a life changing surgery at St. Louis Children's Hospital with Dr. T.S. Parks. SDR surgery which stands for a very long medical term that basically means the Dr. will open James's spine and clip the offending nerve pathways causing spasticity of James's muscles. This will allow Physical therapy to retrain James's legs and allow him to walk independently. The quality of walking will be in question for the first year but James will definitely live a more vertical life than he would without the surgery.
Intensive therapy 5x a week for the first year after surgery and at least 3-4x a week for years 2-4 are a required commitment of caregivers for children receiving SDR surgery. Dr. Parks has perfected a specific technique only performed by himself here in St. Louis or two trained colleagues at Duke & Vancouver Canada.
So...PaPaw & Grandmama are here in St. Louis with James, Mommie & Daddy and the love and support of many many people who have made this trip possible. The outpouring of donations, acts of kindness, gifts, love, hugs, and most of all prayer have been overwhelming and quite frankly... unbelievable. Everytime a roadblock appeared, God had an angel ready to move that stone and pour out a blessing.
James goes to the hospital Wed. for pre-op procedures until noon. Surgery will be early Thursday morning. Tomorrow we're planning a trip to the St. Louis Zoo and to meet up with nephew John and sweet wife Martha! A little fun is required medicine before surgery!
The countdown to surgery begins.........