Monday, July 3, 2017

It's July!

First of all, THANK YOU for aaaaallll the prayers that you have said for us.  Insurance has approved the enzymes and we will start to have the infusions in Memphis starting on July 20th!!!  So we head back to Ohio just ONE more time this week, and then Elle's next infusion will be here at home in Memphis.  I can't even!

So Elle and I head to Ohio Wednesday morning while Frazer and Ann Carlyle fly to Pittsburg Wednesday for the annual Batten Disease conference. Elle and I will join Frazer and Ann Carlyle in Pittsburg Friday after her infusion.  Busy week but we all fly back to Memphis together on Sunday and then no travel for the foreseeable future!

Please continue to pray for health for all of us.  Frazer isn't 100% and I have had a sinus infection and bronchitis of some kind for more than 6 weeks now.  I think I have finally turned a corner with it, but still coughing a bit.  Also, I found out my thyroid isn't working well.  I started taking some medicine for it a couple of weeks ago...hopefully, I will feel some positive effects from the medicine soon.  I am feeling beyond tired, lots of headaches and just generally feel awful all the time.  The last 3 years have been unrelenting stress for us with no end in sight, really.  Although, having Elle's infusions in Memphis should certainly help a little (or a lot!) with this chronic stress-storm we are trying to weather. 

Milla's House is open!!  All are welcome to the ribbon-cutting ceremony July 26th at 10am!  I'm attaching the invitation for the details.  We had our the first ever counseling session at the House last Friday.  :)  We are so excited to be a part of this organization that serves our community so well.  Here is a link for more information about The Kemmon's Wilson Center for Good Grief and their newest location in Midtown called Milla's House...

http://www.baptistleader.org/baptist-news/baptist-to-expand-grief-services-to-midtown-memphis-and-jonesboro/

Also, Caitlin Lockerbie, a reporter from a local TV station did a story on our family and helped us get insurance approval for Elle's enzyme.  We think they did such a great job and are thankful that they wanted to tell our story.  Here's the link...

http://www.localmemphis.com/news/local-news/local-health-alert-family-fights-for-coverage-for-new-fda-approved-drug/t751068979 


May the Lord bless us and keep us and may His face shine upon us and give us peace.

Much love to all - Happy July 4th celebrating!
Dana

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