My apologies for the late up-date on Michael’s condition that began with a series of appointments at Duke last week. I wanted to make sure I had all information together, rather than partial knowledge of his condition and diagnosis of these most current symptoms. As has been the case since September 2004, we never know what is around the corner for Michael in his long, slow recovery. During Michael’s July appointment, his neuro-oncologist recommended more intensive Physical Therapy and Occupational Therapy – and she considered an in-patient approach thinking it may provide the most intensive therapy. Her objective was to find Physical Therapy to address his serious vestibular (balance) issues. Also, she wanted Occupational therapy to work specifically on his eyes and his vision. After conversations with Duke’s PT/OT staff and the social worker assigned to his case, we learned that no residential program would suit his needs. As a result we have been going to Durham twice per week since July. A few weeks ago, Michael noticed that he was having a hard time bending his foot and asked Bobby to take a look at it. Bobby checked his legs for strength, range of motion and sensitivity to touch – part of a typical neurological exam. There was a significant difference in all categories between his left leg and right leg. We notified his neuro-oncologist of the issues to see if she wanted an earlier MRI or appointment than the late October appointment. While the appointments are typically scheduled anywhere from two to four months apart depending on the level of uncertainty of his case, Michael seldom makes it all the way to the regularly scheduled MRI and appointment because invariably a new symptom or event triggers an earlier appointment. As has been the custom, she scheduled a new MRI last week, a full month early. As some of you saw on Facebook, Michael had to endure a three hour MRI of his head and spine last week. Again, as typical, the results caused more shrugged shoulders and “I don’t knows.” The spinal portion of the MRI proved unremarkable. The changes in his brain fluid were not flagrant enough to cause alarm, but the symptoms raised the possibility that the pressure in his brain could be causing the symptoms. He was then scheduled to see Dr. Allan Friedman, Neurosurgeon at Duke, on Tuesday. Suspecting the issue was brought on by nerve damage he was scheduled for an EMG (yesterday) to trace the symptoms through the nerves in his legs. If Dr. Friedman didn’t like what he saw, he could have ordered a flow study to trace the brain fluid through his shunts. With all the uncertainty, Michael (and of course we, his parents) were anxious for answers. The series of many appointments seem to reinforce the likelihood of nerve damage which is the better of the two known possibilities affecting his brain. However, they will continue to monitor the CSF with his next MRI in October. We expect to get the official report in the coming days. Through it all, Michael remains Michael. His strength as he bravely faces his challenges, is aspirational. As always, I thank all of those who continue to keep Michael in their prayers. Your kind words have always (and do!) mean a lot to us all. Bobby Cooper, Dorothy & Michael Cooper
Posted on: Wed, 18 Sep 2013 19:08:36 +0000
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