A little girl I know has been hospitalized at Shands in Gainesville since Dec. 23. She has been battling infection, fever and an array of respiratory and other ailments since undergoing a spinal-fusion operation.
Doctors inserted metal rods into her back and wired them to her spine to prevent scoliosis, or curvature. Over time, the rods fuse to the spine to keep it straight and strong. Post-operative infection is a big concern in cases like this.
I’m not a doctor, but I know this stuff. My daughter had the same operation four years ago without complications. We were told it was necessary to stop her back from collapsing on her lungs and heart, crushing them until she would die.
I talked with our friend’s mother last night. She and her husband have been traveling back-and-forth to Gainesville, trying to balance work, caring for their other child and being with their daughter in the Pediatric Intensive Care Unit. Christmas came and went with barely a notice. Birthdays are coming up. Progress is slow; answers are slower.
I’ve been asked to speak at a fundraising gala to benefit Gretchen Everhart School’s PTO at a dinner Jan. 29 at the Tallahassee Woman’s Club. It is $125 a plate; $800 for a table. The school does a great job for children with disabilities, but funding is short. This is the first time the PTO has tried something so ambitious. So if you want to come, let me know.
But if you do, don’t expect a lot of happy talk from me. My message will be that it is time to stand up for our children. Florida is shamefully behind most of the nation in how it treats developmentally disabled children, and things aren’t going to get better soon.
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