Tuesday, October 13, 2015

October Update

You guys... I really don't love blogging. I want to love blogging. I just don't. 
However ---  I am committed to trying to keep updates about Josiah and our family at least somewhat current, so if this post if it reads more like a list instead of a well crafted wealth of words and feelings you know why. ;-)

Things still seem pretty much the same. For all intents and purposes, Josiah seems to still be in relatively the same "shape" as he has been for the past year. That being said, it is on our minds and hearts that within the next few years we will need to do some remodeling to make our home handicap accessible. 

We are all looking forward to Josiah's Make-A-Wish trip. His wish is for a Disney Cruise and we expect to hear from them very soon with info on our trip!

One new item, Josiah has qualified to participate in a drug trial (click here for more info about the trial).  Last month we went to Duke for two days of evaluations. This included PT eval, blood work, an EKG, 3 MRIs, and a DXA scan. He was so amazing during all of this testing! This week he starts the actual trial. Every four weeks he will go to Duke for an infusion. The infusion itself will last about an hour, and there is blood work drawn before, right after, and five hours post infusion. All of that will equal one long day in Durham! 

This is a double blind study, meaning that all the info is coded and no one knows if he is getting a placebo, small dose of the drug, or larger dose of the drug. If he is getting the placebo, part way through they switch those particpants over to the actual medication. The study is set to run for 2 years. 

In particular, we appreciate your prayers for Josiah as he starts this drug study. 

Thank you all for your love and support!

MRI #2

Best part of the day, eating in the cafeteria!


IV for MRI #3