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2/1/2016 Latest post:
On Wednesday, Feb 3rd, Aron will reach a pivotal moment in his journey. Since the age of 2 we have known that he was dealing with several physical abnormalities. Through years of genetic and neurological testing it was determined that he is afflicted with some sort of connective tissue disorder. At this point we do not have a name to go with his condition, and we might never get one. That is fine, our Lord knows.
Some of the symptoms AJ has are low muscle tone, hyperextension of his joints, nerves don't transmit messages to his muscles, and scoliosis. It was determined early on that in order to keep the scoliosis from worsening, AJ would need to wear a brace. We knew that his was not a fix, it was only there to hopefully keep his spine from getting worse. For several years that seemed to be the case. Fast forward to age 7, he reached a point where he was no longer able to tolerate wearing a brace due to getting pressure sores. Because of not wearing the brace for the past year the scoliosis has rapidly progressed and his spine is becoming rigid.
Which brings us to this week. Dr. Sarwark, Pediatric Orthopedic at Children's, will be inserting rods to straighten AJ's back. Along with this he will also be doing a spinal fusion. Based on the severity of AJ's curve the Dr says the level of complexity of these procedures will be around an eight. The outcome of the surgery will be somewhere between 60-80% correction. Lord willing , AJ will see great improvement of what is now a severe curve with great discomfort.