Friday, February 16, 2007


I don't know what to make of this trip. I am glad it's over though.

First, the accommodations. No single room, well we were alone, but it's designed as a double. It was dirty, even though they had supposedly just cleaned and mopped. The paint was chipped and the ceiling had previously leaked and had plastic taped to it. And I didn't have a 'nice' lay flat chair, I had a recliner. In Boston you get single rooms, with windows into the hallway and nice chairs and clean rooms.

Second, the food. Lunch was oven crispy chicken, boiled potatoes, steamed carrots, a tossed salad, a fruit cup and coffee. Dinner was meatloaf, mashed potatoes, a rock hard dinner roll and hot tea. He's 4!!!! So they finally gave me a menu for breakfast. I ordered oatmeal, a bagel, fruit cup and choc milk. He got pancakes, cheerios, white milk and OJ. Um hello, what was the point of filling out a menu?? In Boston you just call and order whatever you want and within 30 mins it's there.

Third, the EEG. He hates getting the leads put on and off, but once they are on, he's fine. He screamed the entire time they were put on and the entire time they were taken off. My cousin could hear Austin down the hall. And I hate to physically restrain him. We met with the neuro on Wed am and I wasn't impressed. He didn't know how long we were supposed to be there. He wasn't cognizant of Austin's history. Yet, he had been the neuro to approve the stay! You would assume this meant he read the case history. Thursday morning he came in and said the EEG looked great, great sleep architecture, great daytime activity, all around great. I want to be happy, really I do, but I just have so little faith in the local hospital. He has had probably 6-7 EEGs done here. All the early ones were abnormal, which they said, but they missed the hypsarrythmia. As he got better and was seizure free, they said the recordings were normal, but, follow up EEGs in Boston were always abnormal. I know EEGs can change on an almost daily basis, but coupled with his regressions and attention issues, I really didn't expect his EEG to be completely normal. I don't know what to think. I am ordering copies of the recordings to be sent to Boston and NYC. We meet with the NYC neuro next Friday, so I should be able to get her input then.

Until then, here are a few pictures from our stay.
Lunch...he ate the fruit cup. Watching movies and playing with cars.
Our play dough houses. Good thing I am not going to be an architect like Cindy and Barbara!
Oh yeah, forgot to mention that the Looney Tunes didn't show up. They are re-scheduled for Friday. Cousin Aaron should get to see them though. He's expected to be in until Sunday or Monday. We did get to see a big Newfoundland dog named Yogi on our way out. He was just beginning his round of visits.

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