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Chloe Update

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  • marlew47
    First, thanks for all of the supportive and informative messages I have received from this group. I am working to have all of the information about my 14-month
    Message 1 of 1 , Jan 8, 2004
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      First, thanks for all of the supportive and informative messages I
      have received from this group. I am working to have all of the
      information about my 14-month old daughter, Chloe, sent to Dr. Scott.
      We had our post-hospitalization consults with the local neurologist
      and hematologist here in Jacksonville today. The neurologist told us
      we could choose to wait and monitor her for about 6 months to see if
      she has any more strokes before taking her to Dr. Scott, but the
      hematologist said we should get her up there right away. Naturally,
      we are taking immediate action to get her up there right away for the
      angiogram. Everything moves so slowly!!! I completed paperwork for
      the scans to be sent to Dr. Scott last week and his office has still
      not received them. I just want to get the wheels into motion! Some of
      her labwork that was sent to Mayo for review came back showing an
      abnormal reading in regard to protein C resistance which means a
      bloodclotting problem. The hematologist said if the scans did not
      show that her arteries that supply the brain are too narrow, he'd
      just put her on bloodthinners for the rest of her life and we could
      move on, but Dr. Scott needs to determine if that narrowing means
      moyamoya. I will keep all of you posted. Any suggestions on where to
      stay in Boston? If we should stay at the Ronald McDonald house, how
      is that arranged? Do airlines offer discounts for this type of thing?
      How long should we plan to be there? What about my 3-yr old? Should
      we take her with us or leave her with relatives? I'm assuming the
      airfare will be tax deductible. Any advice on the practical aspects
      of all this is greatly needed and appreciated!
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