Coming to ya from my study hall (with horrible camera quality)
So first of all I dyed my hair again 
New color!!
And yesterday (Wednesday = Infusion Day) I got some pretty great news! Our insurance company is almost positive that they will approve for me to get Vimizim at home!! Woo! So if all is well and goes the way we are hoping I will be getting infusions at home in about a month! I can't believe it has been two months since the FDA approved Vimizim ( I will never tire of saying that name) and 6 months since I testified! It seems like just yesterday Mr. Earley and I were starting to write my speech and I had my mom give me her perspective and some ideas and she sent me whole paragraphs. But Mr. Earley says that I wrote that whole speech by myself! It was live casted over the Internet and Mr. Earley got to watch it! My dad and I were on a plane ride home on Valentines Day about to take off when we got the news, I started crying and people stared at my dad like "What did you do to that poor little girl?" Well anyway I should get going my phone battery is running low!!
Sarah Van Orden
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