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
Category: Krabbe
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
The Day Before Krabbe…
Today marks six months since we have seen Tori smile. We only know the date because of this picture and the others from that day. It took us about … Continue reading The Day Before Krabbe…
Celebrating Independence Day
Tori has been SO alert, calm, wide-eyed, and content today! We love when we know she is feeling well and we definitely love seeing her big eyes when she has … Continue reading Celebrating Independence Day
Trying Plan A (The Nissen Saga Continues…)
Tori’s follow-up appointment with pediatric surgery today went well. She slept through most of it. 😄 This was to discuss the results of the upper G.I. study that was conducted … Continue reading Trying Plan A (The Nissen Saga Continues…)
Eleven Months! #ToriTuesday
Tori is eleven months old today! All parents lament the quickness with which time passes, but each month is even more precious for those of us whose babies … Continue reading Eleven Months! #ToriTuesday
Another Emergency Room Visit…
We saw the pulmonologist on Friday afternoon and they noticed that she had a fever of 102. That is the first time Tori has ever had a fever. They gave … Continue reading Another Emergency Room Visit…
Even So, Joy 