Exactly one year ago today we were at McMaster with Emersyn in the neurologists office. Emersyn was three months old at this point. Could you imagine having your three month old baby in a neurologists office? We were the only ones with a baby in the waiting room. We had never heard of SMA and it was on this day last year that an EMG test was done on Emersyn which was so painful for her that she passed out in my arms when it was done. During the EMG she was so brave and Jason held her hand while I sang to her and basically covered her face with mine. Auntie Catherine had to help work the EMG machine as the nurse was unavailable. That was extremely traumatizing for Catherine to have to do but she did it for Emersyn. We had no idea he was even going to test her for anything that day, we thought it was just a verbal consult.We were blown away that he was even performing any tests that day. Emersyn was a hero. Most adults could not have tolerated how painful the EMG was.
The neurologist kept commenting on how social and bright she was and as he was doing the EMG he was saying "come on Emersyn please pass this test sweet heart"! He was rooting for her muscles to respond strongly. It was after she failed to pass the EMG test that the neurologist looked at us and said "I am 60% sure that she has SMA, but we will need a genetic blood test to confirm it". We had never heard of SMA and when he told us that if she had it she would most likely die within a year we basically went into shock. Three days after the EMG was her blood test for SMA to confirm his clinical diagnosis. Then the 6 week wait over Christmas began.....
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