Wednesday, July 20, 2016

It's Soooo Hot

So we are staying inside or in the pool (which all 3 girls LOVE) for sure.  It's ridiculously hot.

Unfortunately there's nothing really positive to report on Elle's condition.  She is still losing skills and losing words (she couldn't remember the word 'up' yesterday).  It's so hard to watch these things disappear.  I know it goes without saying, but it's just  really hard.

Also, we are seeing more disease progression with Milla. She seems to be losing her vision...not sure how much she has lost but I think a good bit.  And I think her dementia progressing.  She is having large emotional swings, including sobbing episodes that just break your heart.  This is a stage we have dreaded so's hard to see her confused and emotional with the darkness (visually) closing in.  Our prayer is that she will be able to be comforted, that she will still feel joy and happiness and that she will continue to know us.  (So far, all these things are still happening.)

Praise God for a good trip to St. Louis!  Thank y'all for praying for us and this trip!  It was a miracle...the girls all traveled well and slept well!  Ann Carlyle had a BLAST - she made some good friends and got to go to the City Museum and Grant's Farm and a Cardinals baseball game.  

Frazer and I also had a good time.  It was not as stressful for me as last year - amazingly even with the girls with us.  There were still times I felt overwhelmed and I came home exhausted but we had wonderful time with other Batten families and we came away with updates on the latest research (it's amazing what they have done in the last 2 years - HUGE strides).  And a big, big thank you to those that made this conference happen, from the BDSRA staff to the doctors to the researchers to the volunteers that cared for all the children...what amazing hearts you all have!  We are grateful to be a part of such an amazing community.

In other news, Frazer started a new job last week.  How about that for crazy?!  He is excited for the opportunity and we are blessed that his old place of employment was so, so wonderful to our family and we feel that the new place will be as well.  Please pray for his continued success and satisfaction with his job.

Things continue to ramp up as we are starting to do more therapy with Elle (speech, occupational and physical) and as we have school starting before we know it and some other changes here and there.

Oh and thankfully, I think we have settled into a new crew of CNA's to help us at night.  There will be 3 regular people each week.  There is a bit of adjustment and learning curve for everyone but they are doing well so far.

I feel so scattered writing this today - interruptions by a couple little girls do not make for good writing. But let's be honest - really, there aren't many moments that I don't feel scattered.  :)

God is good and His love is ever-present.  Thank you for being a part of that as He continues to use you to encourage us, hold us up and love us.  We praise Him in good times and in bad times.  For He holds us close to Himself during the storms.  What a Savior we have.

Much love,

Ms. Melba came for another visit!

Elle with Colson - cousin love :)

Ann Carlyle at The Children's Museum - Mommy date!

Ann Carlyle helping out at Milla's PT and OT with our awesome therapists

Elle with Granddad


  1. Dana, you don't know me and I don't know you personally, but I have been following your blog for a while now, and I just wanted to let you know that I am praying for you and for your family. My own three daughters are close in age to yours,and I cannot even begin to grasp the sadness, fear, pain, doubt, and exhaustion you feel on a daily basis. I am, however, always so encouraged and overwhelmed by how fiercely you cling to the Gospel. And what I usually pray for is that you will continue to experience and know the supernatural peace and hope that comes only from your Savior and rock, Jesus.

  2. My name is Katie Hobson Novikoff, and I'm a friend of Catherine Norman's, and have been praying for and loving you all from afar for years. Just spent time praying for y'all again, for the Lord to comfort and sustain and give much grace to each of you all. May He be your peace hour by hour. Your lives are giving much glory to Jesus. Praying many people are drawn into real relationships with Him because of how He is so big in yalls story.��

  3. Hope she will recover soon and be right back to school. Last month I was searching for a pre-k to enroll my son. My sister recommended a Phoenix pre-k which is quite reputed and known for its qualified teachers.