Though finding eggs has nothing to do with the reason we celebrate Easter (the Resurrection of Jesus), it is a fun activity for children to do. It was a fun … Continue reading Tori’s Bucket List: Find Easter Eggs
Tori’s Bucket List: Jump in a Puddle
One of the greatest childhood joys is jumping in puddles. It’s as if there is a magnet pulling kids toward puddles and they just have to play in them! So, … Continue reading Tori’s Bucket List: Jump in a Puddle
A Night to Breathe
Last year (right after Tori’s diagnosis), I was invited to attend a beautiful evening for mothers called “A Night to Breathe” and it was such a refreshing event. It was … Continue reading A Night to Breathe
A Little Miracle
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
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
Tearing Down a Wall (Literally)
Brennan and I purchased our first home a little over three years ago. It was built in 1954, has plenty of space (1,800 sq. ft spread out on three floors), … Continue reading Tearing Down a Wall (Literally)
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
Even So, Joy 