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April 20, 2009
Nov 1, 2008 to Mar 25, 2009 1065

Well the plot thickens.  Last Thursday I received a call from Lucy’s metabolic doctor, Dr. G.  She was calling to ask me about doing Lucy’s muscle biopsy.  We had a debate about where to have her biopsy preformed, she feels that it would be best to combine her PEG-tube procedure with her muscle biopsy.  This would eliminate her having to have two separate anesthesias.  We agree with her that it would be best to combine the two, but we feel strongly about Dr. S doing the biopsy as he only does fresh muscle biopsy and at CHOP they do frozen muscle biopsy.  From what we have read and understand, fresh is best if you have the option, and we have the option.  If you recall, the scope and peg-tube procedures are two separate procedures and now the muscle biopsy makes three anesthesias.  So we have some decisions to  make.  We are considering having her PGE tube placed down in Atlanta while having her biopsy.  We need to ask more questions to find out if this is even possible.  I’ll post more when we know more.  As far as scheduling her upcoming admit, I think that they are waiting to hear back from us as to what we are going to do.

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