Tag: Krabbe
Tori’s First Birthday Party (Six Weeks Later)
On July 25, we celebrated Tori’s first birthday (a few days early). I realized recently that I hadn’t blogged any of the amazing photos from Katie Bingaman for those who aren’t … Continue reading Tori’s First Birthday Party (Six Weeks Later)
Leukodystrophy Awareness Month – Day One
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
Pittsburgh, Round Three: Day Two
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
Pittsburgh, Round Three: Day One
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
#ToriTuesday Update
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
Dreams of Healing, Part Five
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
Tori’s Baby Dedication
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
How You Can Help
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
Even So, Joy 