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
Tag: Leukodystrophy
Tori’s Medical Equipment
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
Tori Update
Besides the fact that today marks one year since Tori last smiled, there is a great deal for which we are thankful. Tori has been doing amazingly well since we … Continue reading Tori Update
A Week of Lasts
Most parents reminisce about their child’s firsts – first word, first steps, first everything. It’s exciting to watch our children learn and grow as they explore their new world. For … Continue reading A Week of Lasts
Krabbe at First Sight
One year ago today we saw Krabbe in Tori for the first time. We only know this in hindsight – in the moment we had no idea why Tori was … Continue reading Krabbe at First Sight
Occupational Therapy
Today we were visited by Tori’s occupational therapist and two of her students. The students were here to do some activities with Tori as part of their final exam. Tori … Continue reading Occupational Therapy
Home!
Tori was discharged from the hospital around 1:30pm on Sunday! Her sodium has remained steady since they stopped one of her meds. We will continue to add a sodium mixture … Continue reading Home!
Tori’s Bucket List: See The Hotel Hershey’s Christmas Tree
If you haven’t seen The Hotel Hershey at Christmas, you’re missing out. It is a beautiful hotel any time of the year, but it’s extra special at Christmas and we … Continue reading Tori’s Bucket List: See The Hotel Hershey’s Christmas Tree
Tori’s Bucket List: Go to a Hershey Bears Game and Meet Coco
One of the first ideas that came to mind as we created Tori’s Bucket List was to attend a Hershey Bears Game, and we decided to go with Brennan’s mom and … Continue reading Tori’s Bucket List: Go to a Hershey Bears Game and Meet Coco
Updates on Tori
A few updates for those not on Facebook: Her last sodium level was 139, which is a heathy level. Her respiratory virus panel came back negative so she isn’t sick. … Continue reading Updates on Tori
Even So, Joy 