I’ve moved far too many times in my life. From Hayward, CA to Red Bluff, CA (and then another move within Red Bluff). From Red Bluff to Azusa (far too … Continue reading The Big Move
A Season of Waiting
It’s hard to believe that it’s October already. September was a blur, filled with many changes and hardly any free time. Now it’s Fall and the temperatures have cooled, the … Continue reading A Season of Waiting
NBS Advisory Board Meeting, August 23, 2016
Today I attended the quarterly meeting of the Newborn Screening Advisory Panel of Pennsylvania as I did in April and will continue to do until Krabbe is on the mandatory … Continue reading NBS Advisory Board Meeting, August 23, 2016
So, I Got a Job…
As I mentioned before, I recently accepted a part-time position at The Hotel Hershey – more specifically, at The Spa at The Hotel Hershey (where Brennan has worked for 13.5 … Continue reading So, I Got a Job…
Sacrificing the Good for the Great
I knew this would happen. We bought our first home in December 2012 as an investment, knowing that we would fix it up and then sell it and pay off … Continue reading Sacrificing the Good for the Great
Busy Summer and a Much Needed Update
I haven’t blogged much this summer and that has partially been intentional, partially not. Brennan and I have been traveling, working many weekends at MHS, spending time with family and … Continue reading Busy Summer and a Much Needed Update
Will They Wonder?
As we walked through the Hershey Gardens today after locating the tree placed there in Tori’s memory, I noticed all of the bricks and sculptures that had been placed in … Continue reading Will They Wonder?
What Might Have Been
I try not to think about what might have been, cause that was then… We can’t go back again, there’s no use giving in, and there’s no way to know … Continue reading What Might Have Been
Hunter’s Hope Symposium: Thursday
Today we heard reports on the Leukodystrophy Care Network that Hunter’s Hope is working hard to implement around the country. They are the voice of the family in ensuring excellent … Continue reading Hunter’s Hope Symposium: Thursday
Meeting with the Physician General
Today I had the privilege of attending a meeting with Representative Angel Cruz and his staff, Dr. Rachel Levine (the Physician General of Pennsylvania), and two other state representatives regarding … Continue reading Meeting with the Physician General
Even So, Joy 