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Friday, February 22, 2013

On a Plane to Pittsburgh

In January, Kenan and I made our second annual trip to participate in the Program for the Study of Neurodevelopement in Rare Disorders at the Children's Hospital of Pittsburgh. Lead by Dr. Maria Escolar and team, their goal is to improve the quality of life for children suffering from rare disorders and help them live to their fullest potential through education, innovative research and clinical intervention. Through all of the above, they have been the primary resource for how we approach Kenan medically and provide him with the best care. Second but equal, we are grateful to contribute to research that can alter the course of degenerative neurological diseases for the next generation of affected children and their families. 



Kenan undergoing an ABR (Auditory Brainstem Response) which records brainwave activity in response to sound. 




The NCV (Nerve Conduction Velocity) where an electrical impulse is measured as it is transmitted through the nerve. A delay in the speed of transmission indicates nerve disease. In relation to Krabbe, Kenan did much better on this test last year than expected. 




Waiting for Kenan to come out of sedation, post MRI. The images will show the demyelination as it has progressed through his brain. The results of all tests will be compared with those from last year tracking the course of the disease up to this point.

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