Friday, July 21, 2017

Grand Opening Celebration of Milla's House July 26th!!!

It’s time to celebrate the grand opening of Milla’s House! 

We are very excited and would love for you to join us next Wednesday at Idlewild Presbyterian on Union at 9:45am. 

See the official invitation below.  

Thank you for your continued support! 




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You're Invited
Children and Family Enrichment Center at Idlewild
&
Kemmons Wilson Family Center for Good Grief
Milla's House
Wednesday, July 26, 2017
Idlewild Presbyterian Church
28 S. Evergreen
Memphis, Tennessee 38104
9:45 a.m. - Blessing of the House (church grounds)
10:00 a.m. - Opening Ceremony (sanctuary)
Enjoy refreshments after the event.
Join Baptist leaders, the Idlewild community and friends as we celebrate the opening of The Children and Family Enrichment Center at Idlewild and the Kemmons Wilson Family Center for Good Grief – Milla's House.
Designed as a place for children and families, this house symbolizes a commitment to foster emotional health through increased collaboration and specialized services.
Children and Family Enrichment at Idlewild | Baptist Kemmons Wilson Family Center for Good Grief


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

Pictures!

Elle at the Miles for Milla's House Bike Race

Elle and a giant unicorn floaty that she wanted to take with her on a walk through the neighborhood (naturally)

Elle post-infusion feeling a little puny

On our way to the beach Memorial Day week!

Ann Carlyle in Florida

Elle loved playing in the sand and the water

A storm blew over our fence and took out the power for almost a week while we were in Florida - not cool. Thank God for sweet friends and neighbors that propped up the fence and cleaned out our fridge.

A rare night out on the town in Florida

Ann Carlyle photo-bombing the picture I was taking of Frazer and Elle kayaking in the ocean :)


A family picture at the beach - everyone is looking and smiling!

The last couple of hours on our way home from the beach were pretty rough -  Elle finally passed out and gave us 20 minutes of peace

Ann Carlyle and Lady

Lady riding shotgun - she insists on jumping in the car any chance she gets!

Ann Carlyle at Camp Good Grief

A spontaneous morning nap - sometimes life catches up with Elle and she crashes - I'll take those snuggles any day of the week.

Face paint, pjs, Guess Who game-playing and mommy's fuzzy slippers in the backyard as the sun goes down - just a day in the life of Ann Carlyle this summer (and does anyone else think she looks like a teenager in this picture?!)

This girl had suuuuch an amazing time at Camp Good Grief

Elle in her playhouse

Me and my sister, Dawn at the U2 concert that she and her husband, Jeff, took us to in Louisville, KY a couple of weeks ago - such an awesome gift and good time together for a couple of days

A day in the life of Elle - multiple costumes at one time - a superhero pumpkin that day

Elle during an infusion

Elle feeling yucky after an infusion

Another day in the life at our house - Frazer trying to catch a cat-nap and Elle (dressed up of course in her ballet leotard) doing her best to NOT let him sleep (and howbout those legs that are miles-long...)


Invitation for the Milla's House ribbon-cutting ceremony

Milla's marker was finally placed - we are thankful to have it there but it cuts deep into our hearts.  Oh how we miss that little girl.

Sweet sisters at bedtime