AJ, age 2 resides in Waterford, NY
In July of 2012, AJ was further diagnosed with epilepsy and is currently working on getting the seizures under control. He will require braces for his spastisity on his arms and legs, tests will determine this cause. He is still fed via g-tube, but is working more with speech in order to get him to accept new tastes and textures. For up to 4 hours/ day he is off of his portable ventilator, a huge improvement from 24/7 for which mom and dad are very happy about!
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AJ was previously diagnosed with Chiari Malformation, Type 1- a condition where the lower back of the skull is too small or misshaped causing crowding of the brain and pressing it down against the spinal cord. He underwent surgery to make room in his skull and spent the last 2 months of 2011 in the hospital recovering. Doctors have not determined whether there is permanent nerve damage nor the extent.
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