Tori got to go to the beach today! This was a “must”for her Bucket List since I’m from California and we both love the ocean. She loves the sound of … Continue reading Tori’s Bucket List: Go to the Beach and Build a Sandcastle
Category: Krabbe
Tori’s Bucket List: Feed Giraffes
Thanks to our cousin Louise, we got a behind-the-scenes experience with the giraffes at the Cape May Zoo! She called the Zoo and told them about Tori, and they were … Continue reading Tori’s Bucket List: Feed Giraffes
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
Even So, Joy 