We received some interesting news today in a voicemail from Dr. Escolar: She took Tori’s MRI to a neurosurgeon and it was discovered that, even though she does have extra … Continue reading A Little Miracle
Category: Krabbe
The Road Trip that Almost Was…
In early January we purchased our plane tickets for ten days in California with my family and we were SO looking forward to being out there. We had planned to … Continue reading The Road Trip that Almost Was…
Rare Disease Day at the Capitol
Today was an exciting day for Tori (and us). Today those with Rare Diseases in Pennsylvania were recognized and their advocacy efforts were applauded publicly at the Capitol. Tori and … Continue reading Rare Disease Day at the Capitol
Tori’s Bucket List: Attend a Tea Party
When Wendy Myers first asked me if Tori would like to attend a tea party, I imagined a small, simple gathering in a living room or backyard. Never would I … Continue reading Tori’s Bucket List: Attend a Tea Party
Pittsburgh, Round Five: Day Four
Today was our last day in Pittsburgh and it was a fairly easy one. Tori had lab work to check her potassium levels first thing this morning. They have stabilized … Continue reading Pittsburgh, Round Five: Day Four
Pittsburgh, Round Five: Day Three
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
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
Even So, Joy 