Today Tori had a Behavioral Audiology evaluation and a chest x-ray. It was a pretty easy day. For the audiology test they played sounds and made noises to see how … Continue reading Pittsburgh, Round Five: Day Three
Category: Leukodystrophy
Pittsburgh, Round Five: Day Two
Today Tori saw Dr. Escolar and her team and had her MRI. Dr. Escolar is pleased with how Tori is doing and said our next appointment will be in six … Continue reading Pittsburgh, Round Five: Day Two
Unprepared
We are taught from an early age that knowledge prepares you for what lies ahead and can usually ease the difficulty or stress of the situation. We study for exams, … Continue reading Unprepared
Pittsburgh, Round Five: Day One
Tori had two appointments today: ophthalmology and audiology. The ophthalmologist dilated her eyes to evaluate the anatomy and we will get the results later this week. Tori always makes … Continue reading Pittsburgh, Round Five: Day One
Update on the Implementation of Hannah’s Law
We have an update on the status of Hannah’s Law (Act 148 of 2014). Read 2014 Act 148 – PA General Assembly here. I started making phone calls about three weeks ago … Continue reading Update on the Implementation of Hannah’s Law
Unexpected: Our First Year Post-Diagnosis
Brennan and I each wrote our own posts reflecting on how we were doing one year ago, and you can read them here and here if you missed them. We … Continue reading Unexpected: Our First Year Post-Diagnosis
In Lesa’s Words: One Year Ago
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 Lesa’s Words: One Year Ago
In Brennan’s Words: One Year Ago
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
Tori’s Bucket List: Join a Hockey Team
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
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
Even So, Joy 