Oct 16 - NF1/Neurofibromatosis

I admittedly don't know as much about NF1 as I feel I should know at this point.  In-depth research is forthcoming.  What I do know is it's a genetic condition, though it's not passed down from Rodney or me.  I think it's from a mutation in the NF1 gene.  It's the reason behind Joshua's stroke, thus the need for a blood thinner like aspirin to prevent future strokes.  There's much more to it but that's the gist.  

     Joshua's had more tests connected to NF1.  The results have shown that he has an optic glioma/small tumor? (at the optic chaiasm, the crossing of the two optic tracks) and a couple nerve sheath tumors on his spine.  This means he'll need to have continual follow-up care in the near future and throughout his life.

     We've all had a lot to process, especially Josh. He was told pretty early on that he has a 50% chance of passing NF1 to his children.  That was one of the biggest blows for him.  Also the tumors.  And doing all the MRI's has been tough too.

     Overall, he's taken these situations in stride and hasn't let it get him down for too long (after the initial shocks).  We still have questions and concerns, plus a bit of residual aftershock, fear and disappontment.  But, there is so much to be grateful for and thankfully we all recognize the blessings that have come during and because of this trial. 💜

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