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Even So, Joy

Weaving a Brighter Blueprint for Advocacy, Legacy, and Life.

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In Brennan’s Words: One Year Ago

February 12, 2016February 11, 2016 · 3 Comments ·

Brennan and I both took time to write down our thoughts and memories about how we felt one year ago. We also wrote about how we feel and what our … Continue reading In Brennan’s Words: One Year Ago

Her Room

February 11, 2016February 11, 2016 · 12 Comments ·

Her room used to be my favorite place in our home. It was clean, organized, always clutter-free. It was cheerful, colorful, calming. I made sure remained perfectly neat at all … Continue reading Her Room

Dreams of Healing, Part Seven

February 11, 2016February 10, 2016 · Leave a comment ·

Whenever people message us to share dreams they have of Tori being healthy and healed, we save and compile them into blog posts because they are so interesting to us … Continue reading Dreams of Healing, Part Seven

Tori’s Bucket List: Join a Hockey Team

February 10, 2016February 10, 2016 · Leave a comment ·

We were recently contacted by a woman whose daughter plays for one of the Hershey Jr. Bears hockey teams. She was touched by Tori’s story and said they really wanted … Continue reading Tori’s Bucket List: Join a Hockey Team

Tori’s Bucket List: Wear Mama’s Wedding Dress

February 8, 2016February 8, 2016 · 15 Comments ·

Some of the items we have added to Tori’s Bucket List were inspired by the lists of her Krabbe buddies. This one was first done by Anniston, and when I … Continue reading Tori’s Bucket List: Wear Mama’s Wedding Dress

One Year Ago Today: The Leukodystrophy Diagnosis

February 6, 2016February 6, 2016 · 1 Comment ·

     After Tori’s MRI on February 4th, we received a call from a neurologist inviting us to come in to discuss the results. It was in the middle of the … Continue reading One Year Ago Today: The Leukodystrophy Diagnosis

One Year Ago: The First MRI

February 4, 2016 · Leave a comment ·

Tori’s first MRI was one year ago today. We blogged about it here and here.         We didn’t see the images of the MRI (or learn in detail … Continue reading One Year Ago: The First MRI

Vision Therapy Fun

February 2, 2016 · Leave a comment ·

Tori’s vision therapist always finds really creative ways to stimulate Tori’s senses – today we celebrated Mardi Gras a bit early 🙂 Besides looking at various items, Tori felt and … Continue reading Vision Therapy Fun

Eighteen Months

January 30, 2016January 30, 2016 · 6 Comments ·

  Today marks Tori’s eighteen month “birthday” and it is quite a milestone in the world of Krabbe.            One year ago she was six months old; today … Continue reading Eighteen Months

Tori’s Medical Equipment 

January 28, 2016January 28, 2016 · 1 Comment ·

I thought many of you might be interested in learning more about the various pieces of equipment in our home that help keep Tori healthy, nourished, and comfortable. Each of … Continue reading Tori’s Medical Equipment 

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