A Googling We Go

Forgive me if this isn't the most clever of posts, but my brain is swimming with medical jargon and new bits of information resulting from my latest Googling marathon. (It should be an olympic event.) Here's what I have come up with so far:

• Unilateral Periventricular Nodular Heterotopia is a conditon of the brain in which gray matter is found in areas where the should be white matter.
• The outer layer of the brain is known as the cerebral cortex or the ‘grey matter’. It covers the nuclei deep within the cerebral hemisphere known as the ‘white matter’.
  Grey matter is the closely packed neuron cell bodies form the grey matter of the brain. The grey matter includes regions of the brain involved in muscle control, sensory perceptions, such as seeing and hearing, memory, emotions and speech.
  White matter is the neuronal tissue containing mainly long, myelinated axon, is known as white matter or the diencephalon. The nuclei of the white matter are involved in the relay of sensory information from the rest of the body to the cerebral cortex, as well as in the regulation of autonomic (unconscious) functions such as body temperature, heart rate and blood pressure. Certain nuclei within the white matter are involved in the expression of emotions, the release of hormones from the pituitary gland, and in the regulation of food and water intake. 
• The genetic mutation that causes this condition also has very serious cardiac implications, causing narrowing of the arteries and heart failure.
• Along with this diagnosis comes the official label "mentally retarded".  The severity of which varies from case to case.

We are somewhat relieved to have some answers and realize the news could have been much, much worse.  On the other hand, this is not the news we were hoping to hear.  We will be taking Jack in soon for another round of genetic testing and an echocardiogram and we'll be sitting down with Dr. Cohn (his Genetic Neurologist) to go over the actual scans.  The results of these appointments, along with the information we already have, should help us process the diagnosis and come up with a plan of action.