September is both Leukodystrophy and Newborn Screening awareness month! Krabbe and the other leukodystrophies are so rare that most are unaware of them. Let’s change that this month. Each day … Continue reading Leukodystrophy Awareness Month – Day One
Today was a very busy day and we are all so tired. We started with Tori’s vision and physical therapy evaluations at Dr. Escolar’s office. We then ran … Continue reading Pittsburgh, Round Three: Day Two
We traveled back to Pittsburgh last night for our third visit to Dr. Escolar and her clinic. Such a beautiful sky! We arrived at our hotel around 9:45pm, and … Continue reading Pittsburgh, Round Three: Day One
Thanks to the Children’s Hospital, Jeanine Pittman, Molly Howard, and Tracy Gray, we had a wonderful visit to the Pittsburgh Zoo! Tracy organized a special experience for Tori where she … Continue reading Tori’s Bucket List: See Giraffes (Pittsburgh Zoo Edition)
Tori has been very alert and content this past week! We are so thankful to know that she is comfortable. Tori was weighed and measured today and she hasn’t gained … Continue reading #ToriTuesday Update
People continue to have dreams about Tori being healed and it fills our hearts with cautious hope. Please continue to share your dreams with us! I just woke up from … Continue reading Dreams of Healing, Part Five
We had always intended to do a formal dedication of Tori at our church, but it became quickly forgotten in the midst of all that has happened in the past eight … Continue reading Tori’s Baby Dedication
We are asked several times a week how people can help us practically and tangibly, and we usually don’t have an answer. God is taking amazing care of us and … Continue reading How You Can Help
I’m not sure I can adequately express how amazing today was! After a six hour break at home, we headed to City Island as a guest of the Senators. They … Continue reading Tori’s Bucket List: Harrisburg Senators Game
When we were putting the list of adventures together, we wanted to take Tori to a local water park to float down the river. We knew it would be peaceful … Continue reading Tori’s Bucket List: Floating Down the River
Even So, Joy 