Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi! Am sending to the group a portion of an email sent out today: still needs prayer for his leg muscles. Today is Wednesday, he was released from the hospital last week Thursday, and his legs are still hurting him. The pain has moved from behind his knees to the fronts of his legs in the upper thighs. It appears to be getting better today, but it is still a concern since this is not the typical pattern after a release from the hospital. We had our appointment with Dr. Haas, Mitochondrial specialist in SD on Tuesday. He spent two hours in retrieving information about , Jordan and Shirley, and evaluating the kids physically. Shirley was able to get a few questions answered, but was unable to ask all of her questions as Dr. Haas needed to move on to his next patient. We did not get any diagnosis ideas (other than mentions of different possibilities--which Shirley knew already from doing research) from him as he feels he needs to do some more blood tests and cardiac tests on only, as he is the one that has had the most episodes between the boys. Plus, he is waiting to see the rest of the results from the frozen muscle sample that is still being tested at Columbia University, NY. He wants certain tests to be done on the muscle sample, but I don't think there will be much, if any muscle left by the time the last test is done at Columbia Univ. Also, Please pray for there to be enough muscle left for some of these important tests that he would like to have done, because, we do not plan to put our son thru another muscle biopsy--at least, not in the near future anyway. Thank you for your prayers, Aude and Shirley, mom and dad to and Jordan Quote Link to comment Share on other sites More sharing options...
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