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 :)

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