Tuesday, October 25, 2016

Happy Birthday, Frazer!!

Hey there!  I can't believe it's been so long since I last updated everyone.  Time flies, right?

Elle has had her 3rd enzyme infusion - Frazer took her up to Ohio a couple of weeks ago.  All went well with no complications.  Unfortunately, she herself hasn't been doing great...her drop seizures have been nearly constant most days, she is super agitated and is struggling with her walking and talking.  But we have had a couple of better days thrown in there - she has seized less and has not been as agitated.  

Frazer and Elle had a good time in Columbus together and stayed for a couple of extra days so that they could cheer on the Nationwide Children's Marathon, where one of the precious little girls with Batten Disease was celebrated at mile 22.  They hung out with a bunch of other Batten families and friends of those families and the professionals that help them (doctors, nurses, therapists, teachers, principals, etc) - it was very good for their souls.

And here we are already about to head back up to Columbus for infusion #4!  Elle and I are flying up tomorrow afternoon.  I'm so thankful for this opportunity to help our baby girl.  It's been pretty hard - all this travel - but we all daily give our lives for our children, right?  We do it with a happy and thankful heart.

We've seen some behaviors with Ann Carlyle that we think show that she is struggling a bit with the travel as well.  But, she is a very open kid and we have lots of conversations with her about everything and like always, she is a champ and doing well overall.

Please pray for Columbus and Ann Carlyle and Elle and especially for Milla today. 

Milla is having a very rough time and we are having a tough time making her comfortable/figuring out what to do for her.  The last 2 days, her little body has been in a tight ball - every muscle flexed and trembling.  She has been anxious most of the time.  Sometimes 'just' looking worried, sometimes whimpering, sometimes sobbing.  We've seen this before - lots of similar episodes but we've never seen her body do this 99% of the time for 2+ straight days, despite all kinds of medication for seizures and spasticity.  

I do feel like for a few hours this morning she was a little looser and perkier but she is all drawn up/locked up again now.  I just want to help her, to make her comfortable and happy and we just can't figure out this mess.  She can't tell us what is wrong or what she needs, so we are left guessing.  I hate it.  I'm so thankful though for the times in the last couple of days that we have been able to get her smiling and even giggling, despite what her body is doing.  My heart is happy seeing our Milla-willa shining through it all.

On a good, great, awesome note, today is Frazer's 39th birthday!  Holler at him if you can today - he deserves to be celebrated.  :)  He's the best and we love him so, so, so much.  

And whenever Frazer's birthday comes around, we have Milla's birthday peeking around the corner.  Next Wednesday, November 2nd, our middle baby is going to be SIX years old!!!  

Thank you to all who came to pray for us at the service last week and for those that prayed absentia and for that matter, all of you that are praying so often for us!!!  We can't believe all the wonderful people that God has put in our lives in all different ways.  Amazing, just amazing.

And we are so, so thankful for God continuing to make connections for us in Columbus - it is truly becoming our home away from home.  There are big, amazing things going on there.  People are giving so, so generously of themselves to specifically help us and the other 4 families that are in this extended/open-access enzyme program.  I'll have to fill you all in another time about this, but I'll just say that needs that we didn't even know we had are being met left and right!!

I'm glad to end on a happy note.  I hate having bad news every time I send an update out.  But God is always present, always showing up - sometimes in such unexpected ways, sometimes in big ways, sometimes in small ways.  As tough as things continue to be, I am always reminded of how much He loves me and my little family.  The chronic nature of this disease and the grief that comes along with it is exhausting and can be debilitating at times.  Praise God for giving us hope - Jesus.  I pray that you all experience His love and presence as well this week.  

Good reading awhile ago...can't remember where I read it...but it's good...

"...if He can give us peace that passes all understanding, our lives and struggles might also pass our understanding on this side."

Stay the course everyone. 

Much love,

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