When my grandfather passed away last month after a long battle with Alzheimer’s, I started thinking about Heaven much more than usual. We all rejoiced knowing that he was able … Continue reading Homesick
Tag: Krabbe
Tori’s First Birthday Present
We bought Tori a first birthday present! (Brennan is holding her feeding equipment,because we forgot the pole). With the ever-increasing amount of equipment she requires, it became quickly evident that … Continue reading Tori’s First Birthday Present
Tori’s Adaptive Stroller
The Zippie Voyage was delivered today! Many families wait MONTHS to get their equipment, which is just wrong. We are so blessed that it took only three weeks! This … Continue reading Tori’s Adaptive Stroller
#ToriTuesday Update
We updated so frequently while in New York last week that there isn’t much to say today! She was just weighed and is up to 14lbs 12oz – almost 15lbs! … Continue reading #ToriTuesday Update
Tori’s Bucket List
As we talked with other families at the Hunter’s Hope Symposium we discovered that many of them had “bucket lists” of things they wanted to experience with their children while … Continue reading Tori’s Bucket List
Hunter’s Hope Symposium: Day Four
Today was a “free day” for families to do as they pleased. Most spent time at the pool and relaxed around the resort. Brennan played golf with three of the … Continue reading Hunter’s Hope Symposium: Day Four
Hunter’s Hope Symposium: Day Three
Today’s format was similar to yesterday: breakfast, seminars updating us on current research and legislation, and plenty of social time. One of the amazing things that was shared was this: … Continue reading Hunter’s Hope Symposium: Day Three
Beauty in the Midst of Brokenness…
As we have enjoyed the past few days here in New York with our leukodystrophy family, what has struck me more than anything is the love that radiates from each … Continue reading Beauty in the Midst of Brokenness…
Hunter’s Hope Symposium: Day Two
What a busy and fantastic day! Tori got to spend time with some of her buddies…this is Parker from Maryland. He is eight months old. We heard from several … Continue reading Hunter’s Hope Symposium: Day Two
Hunter’s Hope Symposium: Day One
We made it! Our day started early as we had to go pick up our rental vehicle. We decided early on that renting a bigger vehicle was essential if we … Continue reading Hunter’s Hope Symposium: Day One
Even So, Joy 