Kinsley was born with T8/T9 vertebraes partially fused with a tethered spinal cord. She also developed a syrinx (cyst) inside of her spinal cord. She had the spinal tethered cord release surgery in 2008. Last checked, she had a 46 degree scoliosis and she currently has a large right rib hump.
Kinsley is not a stranger to surgery. She is considered a VACTERL child. Her first surgery was at 2 days old to connect her esophagus, detach the upper part of the esophagus from the trachea and attach it to the lower esophagus. She had 3 laryngeal cleft repairs, detethering of the spinal cord and countless small surgeries with some OR visits to have a quick look and make sure everything was okay. We are doing everything to avoid another surgery, because the back surgery would put hardware inside her and because of her tight spinal cord I’m not sure how straight they could get her back. Kinsley started being a 20 hour a day brace wearer at the age of 6. But, this has never stopped her from doing what she wants lol!
Out of all all the places across the country Kinsley’s medical journey has taken us, we have never had to fork over so much cash up front. Kinsley’s new back brace is $6500, home traction machine $7K, and $5k for each week of treatment. Initial treatment is 3 weeks long then a week long treatment every 3 months until Kinsley is done.
Kinsley’s initial surgery was at UTMB then the rest were performed at Tx Children’s Hospital except for the 3rd laryngeal cleft repair was at Cincinnati Children’s hospital at the airway digestive unit, she was a tough case. And one trip to NIH in Maryland to study Kinsley because she is a VACTERL child. VACTERL is an acronym for a series of birth defects.
Please pray for our safety in the car on the way there and back. We need the car to bring all of Kinsley’s equipment back. And please pray that Kinsley’s treatment is successful with no complications with the syrinx inside the spinal cord.
Thank you everyone!
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