Thursday, December 30, 2004
Happy New Year Everyone!!!!! Roo and I leave for Ohio on Sunday. We are going to be very very busy. The doctors up in Cleveland have lots of tests planned for her. On Monday, the 3rd, she will have an overnight EEG, Tues., She has another biopsy, and then in the afternoon we meet with an epilepsy doctor. Weds., They have 2 MRIs scheduled for her. Weds. afternoon we meet with Dr. C, Thursday, she sees the opthamologist and has an evoked potential test. I received the report from the neurologist from the Cleveland Clinic earlier this week. It was very thorough, he got all the info, and history right! He wants to test Roo for Krabbes disease and other Storage diseases. They did so many blood tests on her that haven't been done before. There wasn't enough blood to do the peroxisomal panel or the co enzyme Q tests. So, they will redraw some blood when we are up there this week. The doctors impression was........Severe, progressive encephalopathy, manifested by microcephaly, global delays, failure to thrive, severe hypotonia, mixed refractory epilepsy, and possible neuropathy. Of course, this was all stuff I already knew, but seeing it in black and white is always another punch to the stomach. Roo has been doing OK this week. She seems to have alot of days where she is very alert, alot where she only smiles a little bit ,and seems to be in her own world lately. Her seizures have come back full force. I believe she is having about 50-60 a week. Her breathing is good *knock on wood*. Please pray that we get through next week with no bumps in the road and pray for an answer for us. I really feel good with these new doctors. They said there is a 70% chance we will get a diagnosis. Hope everyone is blessed in this new year to come.
Those are hard words to read...still....but she is at peace.
p.s. I still wish she was here in my arms everyday.