Home again, just as suddenly!

Amelia was discharged this afternoon. After two doses of steroids and some I.V. zofran to fight the vomiting, she was tolerating liquids and keeping them down, and she was no longer running a fever. Our favorite neurologist was on, and took 2 1/2 hours to observe Amelia and take me through the images from each of her CT scans and MRIs. The results of the latest MRI are sobering. The scan showed increased damage in her cerebellum (which is responsible for balance, some speech, coordination, and fine motor skills), and now damage elsewhere in her brain, in her temporal and occipital lobes on the right side. The temporal lobe damage may manifest in auditory sensation/perception, inability to selectively pay attention to visual or audio stimulation, impaired visual perception, inability to organize incoming verbal information, impaired long-term memory, and altered personality and behavior. The occipital lobe damage is mostly apparent in vision-related deficits and altered eye movements, such as the eye crossing Amy is currently doing and her double vision and inability to react normally to visual input.

The neurologist basically asked us to perceive Amy as suffering an acute (sudden) health event that is now a chronic health problem. It will be months or years before the damage is healed, most likely. The steroids should alleviate some of the symptoms in the short term, but once they wear off, the doctors expect a regression or even total relapse into the neurologic problems. The neurologist we like told us to take Amy home today and enjoy the fact that she is functioning fairly well on the steroids, fully expecting that we may be back in the hospital one or more times as we go through the healing - or lack of healing - that is to come. The tests being run reflect the gamut of conditions that could be at the root of this problem - from viral infection or the insult of the surgery, to early onset multiple sclerosis, to leukodystrophy, to autoimmune demyelinating disorders. I feel most hopeful that Lyme disease may be the culprit, and should get the latest bacterial and viral cultures and antibody tests back early next week at our immunology appointment.

Amy has an appointment on Tuesday to begin exploring hereditary causes for this condition. Her current diagnoses are acute disseminated meningoencephalomyelitis (ADEM - more common post-viral or post-immunization reaction in children than adults), rhomboencephalitis (swelling of the brain stem), and Acute Demyelinating Myelitis (ADM), a very rare disorder in children. I will be doing more research on all of this in the next few days.

So, as suggested by the good doctor, I am going downstairs now to enjoy Amelia being home. We are playing Wii and then watching UP. It should be a wonderful night! Thank you for your prayers, and keep them coming - we are into the marathon version of this trial now, and your friendships, encouragement, and help is so much appreciated.