Monday, September 17, 2012

So perhaps, just maybe, fevers are a part of the form of muscular dystrophy the girls have.  I say this, because after my wallowing last week (which resulted in NO chocolate chip frappes that day, so bizarre) I decided to reach out to a fabulous group of people on Facebook who all either have Limb Girdle Muscular Dystrophy or have children with it and ask them about random fevers.  And to my astonishment, it's common.  Very common.  No one has said they know it's part of LGMD but I really think it is just too coincidental for it NOT be to part of it.  I'll be asking at our October 26 appointment with the specialist and her team from Iowa City.

I'm actually quite excited for that appointment.  I remember going to Caden's appointment soon after his diagnosis and just being so overwhelmed.  So fearful.  So upset.  So everything and nothing, all at once.  But now, I am excited.  I want to get some answers, and these people have answers!  There is a lot that is known about LGMD and I want to learn it.  They should even be able to tell us what they see in the girls in terms of strength and prognosis, which is encouraging as well.  Of course we know logically we'd never want that crystal ball to see our futures exactly, it sure does help to have some idea of what's coming.  Then again...maybe not.  Anywho, I just want to hear what they have to say!

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