Sunday, July 30, 2017

Lots of Big News!

So I'm sure many of you have seen that we have had a lot going on lately!  Good news all over!

First of all, Elle had her first infusion here in Memphis at LeBonheur Children's Hospital!  June 20th, we were able to drive about 20 minutes to downtown, get Elle's enzyme infusion and were home by 2:38pm.  A.M.A.Z.I.N.G.  We are thrilled.  No packing, no coordinating childcare for Ann Carlyle for 3 days, no flying the day before infusion, no rental car, no killing time (with a very restless 5 year old) in Columbus, no overnight stay in the hospital, no flight home when Elle is feeling the worst of her post-infusion symptoms.  We all slept soundly in our own beds and we didn't have to recover from all the travel/being away from home/sleeplessness.  And because of that, we had a wonderful weekend that was restful but fun too instead of just trying to keep it together for one more day.  (Don't get me wrong, I still have plenty those days of just trying to keep it together, but we have removed a big and regular cause of that insanity, and for that, we are just so thankful.)

A huge THANK YOU to the LeBonheur team that pulled off Elle's first infusion off without a single hiccup - and all the while, celebrating every bit of it. We had so many people that came to see us that day to wish us well and to offer congratulations and at one point, sparkling juice in champagne glasses was passed around to mark the occasion!  It was a wonderful and (good) emotional day. 

A special thank you to Karen Butler at LeBonheur who worked tirelessly (not exaggerating here) with Frazer and Biomarin to get insurance approval in order to make this happen at our home hospital. She and Frazer spent countless hours everyday for at least 2 months - on the phone, going in circles, jumping through all the hoops and finally, finally their hard work paid off.  To say this is changing each one of our lives is an understatement.

And if that wasn't good enough news, Milla's House is officially open!  The celebration and open house for the newest location of the Kemmons Wilson Center for Good Grief - Milla's House - was yesterday.  So much hard work and support was and is still being put into Milla's House.  And we truly are honored that our girl's life is being celebrated in this way and we are honored, too, that we can be a part of helping the Memphis community.  Heaven knows, there is so much brokenness and we all need Jesus.  

Frazer and I were asked to speak at the ceremony, and here is what I said...

I wish that everyone in the world knew Milla.  If I could, I would talk about her for 2 days straight.

Milla was a firecracker from the day she was born. 

She did everything big.  

She played big, she laughed big, she got frustrated big, she yelled big, she dressed up big (most of the time, she had on no less than 3 tutus and amazingly could sprint around the house with my highest heels on), and she climbed and jumped off of everything she could.  


She also was a big-time introvert and gave everyone she met the stink-eye when she was little.
But when she was at home, she was a complete ham.

She just wanted to laugh and make us laugh.  

(Unless of course, she was frustrated and then everyone went down with her.)

I used to say, if Milla was in the room, we were all having a ball or we were all having a really bad day.

But then she had a seizure.
And then another and another and all of a sudden she was having to interact with new people constantly…mostly in the medical setting.

And her little self, although forced by circumstance, blossomed into an extrovert - looooving to be around people and charming everyone she met.

Her heart grew and grew.
And her laughter grew.

Even as her body stopped working. 

She would scrunch up her nose and smile so big - to her face’s fullest capacity.  

And even when her eyes grew dark and she couldn’t see anymore, she loved the sound of laughter…the sound of other people having fun in the next room would make her smile and giggle.  She glowed.

And so she became a bright, bright, bright light for Jesus.  

If Milla was near, you could feel the warmth of Jesus’ love radiating out from her.

We are so thankful to honor her life by helping to open a new Center for Good Grief.
Our prayer is that through Milla’s House and the incredible people that work there, people will feel the warmth of Jesus’ love during perhaps their darkest of days.

Thank you again for supporting us and Milla’s House!!

Thursday, we go back to LeBonheur for Elle's 24th enzyme infusion.  Please pray that all goes well.

We seem to be at a good place with night-help for Elle so praise God for that!!

Please continue to pray for us all as we miss and grieve for Milla.  Our family is just not complete without her.  We miss her all day every day.

Thank you for being with us and carrying us through this journey.  

Much, much love!

Elle after her first infusion at LeBonheur

Frazer's parents, Kent and Kathie, are celebrating their 50th wedding anniversary this year!!

Elle and 2 of her AWESOME nurses at Nationwide in Columbus, OH as we left the hospital after her last infusion there.  Bittersweet.  We were wrapping up her 22nd infusion there. 10 months.  Needless to say, we love these people.

Elle and Ann Carlyle snuggling before bedtime

Me and Elle during her first LeBonheur infusion - wiped out

Dr. Boop accessing Elle's ventricular port at LeBonheur

Celebrating Elle's first infusion at LeBonheur!!!

Good times at dinner time with Elle :)
Milla's House is open!!

These two :)

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...

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... 

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!


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