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Weekend Update #1

12/30/2017

 
Hello Madi Fans and Followers, 
Unfortunately Madison's pain levels increased fairly quickly and significantly last night and this morning. She had a BFF visit scheduled but asked that it be postponed. Her doctor came out today and as in the past, has increased the base level pain meds to stay get ahead of it (it takes 3-4 days to take effect), but also increased the fact acting meds. That means Madi's potentially entering another hibernation mode. The fast acting meds mostly knock her out, and it'll take a few days for the base meds to kick in. Madison requested that any visitation requests are filtered through her dad over the weekend as Madi will likely be hibernating.  

So Color Run 2018, who's in?! Madison's nurse and doctor went to cheer her on in November, more here. Madison's doctor basically bought her everything the concession stand had... add-to-cart. Madison's nurse Jan played the role of Paparazzi
. We've already committed that we'd do the 2018 run next year in t-shirts with Madison's picture on it in her honor. Jan had a book made and presented it to Madison, which was an incredible moment. I think we've already decided on the picture for the t-shirts. Jan had a print laminated on wood and gave it to Madison's doctor. The incredible bond the they share is so special... almost magical.    
Picture
Picture
Picture
The picture on the T-shirt we'll wear for the Color Run 2018 will be either the one Jan RN is holding, or the one here. We (Madi included) will figure out how it will benefit one of her favorite non-profit charities. 

Thank you again Julie, Deanna, Theresa, and Agi for this unforgettable gift. 

Love, 
The Jones Family

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