Wolfcries
11-02-2001, 05:21 PM
When do we say "ENOUGH"
I would like to thank you and everyone for all their support.
It has been very busy. We have had the results back from Childrens hospital on the CT. It is not strokes as we had first thought. The CT shows that Ashley is now deteriorated to having a cerebral demyelination as well as the peripheral. The demyelination is in the white matter of the brain, that is the central point for our touch, feeling sensations as we feel with our brain and not our body.
We went to Childrens for tests and to see a microbiologist. They just said Ash is a puzzle and will take some sorting out and putting the pieces together to find a diagnosis. They said it is going to be very rare as to what she has, and it is possible we may never get a diagnosis.
Sunday we leave again for Childrens, an MRI and lumbar puncture. We see her orthopaedic surgeon, opthalmologist, microbiologist, then another EMG. We then see her Neurologist last appointment is with Neuropsychology, 7 hours of testing. Because we live so far from the hospital it is all done in one trip. I am worried how Ash will do with all of this, as it is all in 3 days.
I wonder when to say NO, this child has been thru enough. I also know she may need different treatments. What do we do? I have spent a lot of time thinking and I don't want her to go through much more. Nothing we have tried has helped so far. Only time will tell me as to how she will be in 2, 5 ,and 7 years from now. The doctors don't know. How do I figure it all out.
I will let everyone know how she is doing when we get back.
Good wishes to all.
~Leah~ and my Ashley.
I would like to thank you and everyone for all their support.
It has been very busy. We have had the results back from Childrens hospital on the CT. It is not strokes as we had first thought. The CT shows that Ashley is now deteriorated to having a cerebral demyelination as well as the peripheral. The demyelination is in the white matter of the brain, that is the central point for our touch, feeling sensations as we feel with our brain and not our body.
We went to Childrens for tests and to see a microbiologist. They just said Ash is a puzzle and will take some sorting out and putting the pieces together to find a diagnosis. They said it is going to be very rare as to what she has, and it is possible we may never get a diagnosis.
Sunday we leave again for Childrens, an MRI and lumbar puncture. We see her orthopaedic surgeon, opthalmologist, microbiologist, then another EMG. We then see her Neurologist last appointment is with Neuropsychology, 7 hours of testing. Because we live so far from the hospital it is all done in one trip. I am worried how Ash will do with all of this, as it is all in 3 days.
I wonder when to say NO, this child has been thru enough. I also know she may need different treatments. What do we do? I have spent a lot of time thinking and I don't want her to go through much more. Nothing we have tried has helped so far. Only time will tell me as to how she will be in 2, 5 ,and 7 years from now. The doctors don't know. How do I figure it all out.
I will let everyone know how she is doing when we get back.
Good wishes to all.
~Leah~ and my Ashley.