Fridays haven’t been kind to us in the past two months. Tori was given a non-specific leukodystrophy diagnosis on a Friday. Tori was admitted to the hospital on that same … Continue reading A Good Friday, For Once
Category: Family…
Tori in the News
A reporter came over today to talk to me (Brennan was at work) about Tori and Krabbe.  You can read the article here. We are so thankful that the … Continue reading Tori in the News
A New Kind of Love
Brennan and I have gone through what seems like a lifetime of emotions in the past three months. From such joy and love in seeing our baby grow and learn, … Continue reading A New Kind of Love
A Timeline of Events
For my own benefit and for those who missed the start of Tori’s story, here is a brief timeline of what happened. Krabbe works very quickly. As we look back, … Continue reading A Timeline of Events
Early Intervention Intake
It has been a quiet week in terms of appointments for Tori – SO wonderful. We haven’t had to subject her to being in the car since last Friday and … Continue reading Early Intervention Intake
Surgery Date
Short update…
Tori’s g-tube surgery will be on March 23rd in Hershey. She will be in the hospital at least two days, likely more.
We also have decided to go ahead with the Nissen procedure at the same time. We read about it, heard from a couple of Krabbe moms who regretted not doing it at the same time, and watched how many times Tori spit up or threw up this weekend, and we feel that it is the best move to make. We don’t want to have to do this, but it will make her more comfortable.
This also means that we likely won’t come to California until April now.
Only three more weeks of the NG tube 😄
Patience and Grace
I have been learning a lot about grace in the past few years – mostly pertaining to how infrequently I offer it in my daily life. The book “Grace” by … Continue reading Patience and Grace
My Heart’s Desire for Tori
Thoughts that cross my mind almost daily…and prayers that I pray moment by moment. Thank you, Jesus, for the beautiful gift you have given us in Victoria. Lord, I want … Continue reading My Heart’s Desire for Tori
The Hummingbird Program and the G-Tube
Today we had two appointments: The first was with pediatric surgery to discuss our options for a G-Tube, and the second was with the Hummingbird Program to discuss comfort care. … Continue reading The Hummingbird Program and the G-Tube
Trusting God
I have been a follower of Jesus for most of my life. I have attended church since I was born and officially became a Christian when I was eight. During … Continue reading Trusting God
Even So, Joy 