These days there is an awareness day for just about everything. It is awesome, but very bittersweet for us. September 18th is Pitt Hopkins Awareness Day, and as much as I love our new extended family, I wish we were not a part of this day. The Bitter I try to keep things positive, but… Read More The Bittersweet Awareness Day
Logan is becoming quite the pro at sporting event appearances! This past weekend she was asked to be a part of the Durham Bulls game, which was being sponsored by UNC’s Children’s Research Institute. She was chosen to receive the game ball along with UNC’s new Chair of Pediatrics, Dr. Stephanie Davis. How cool is… Read More Hit Bull, Find Cure
In April we took the kids to Disney World, and guess what…we survived! We had been talking about going for a while, and decided to just do it. Those of you that plan a year in advance, I envy you. We had a small window to plan it, which I wrote about HERE. Yes,… Read More Disney…We Survived!
Check this thing out! This is Logan’s new bike, and it’s not just any bike. This is an adaptive bike, geared and fitted just for her. It is the ultimate therapy tool with maximum fun all in one! We have our dear friend, Rob (that’s him up above), to thank for this. Rob was one… Read More Coolest Bike For the Coolest Kid!
Every year we fundraise for the Pitt Hopkins Research Foundation’s largest and most successful event of the year…UPenn’s Million Dollar Bike Ride. UPenn will match ALL donations up to $50,000, which is HUGE for our families!!! Every year our amazing friends and family help us reach our personal goal, and we are especially excited this… Read More Logan is in Training For…
There is something bittersweet about being part of a day like today. I don’t think anyone ever wishes to be part of this community. If you are part of it, either you or someone you love is facing some undesirable circumstances. However, being a part of this day means that you have surrounded yourself with… Read More Rare Disease Day 2018
Last week we had the opportunity to head down to Atlanta, GA…with just Logan! A clinic specifically for Pitt Hopkins was organized by a fellow PTHS mom, and founder of the Pitt Hopkins Research Foundation. It was fantastic. We had a little over a month to start planning…and stressing. We needed to bring all medical… Read More Logan Takes Us To Atlanta!
I always try to look at the positive aspects of every situation, especially with Logan. Finding the good in things, even if it is just the tiniest speck, often helps get me through this hand we were dealt. And, it makes me a better mom and advocate for all of my kids. Well, it took… Read More When Answers Can’t Be Told
October 7, 2017 will go down as one of the best days ever for our family. And, quite certainly for Logan. If you haven’t heard (we’ve only been talking about it on social media for a week!), Logan was chosen by UNC Children’s Hospital to do the coin toss at the University of North Carolina’s… Read More Logan Becomes a Tar Heel!
This weekend Logan will be doing the coin toss at the UNC vs Notre Dame football game! I cannot tell you how excited we are about this! We have strong ties with UNC, so it is extra special for us. UNC Children’s Hospital contacted us while we were at the beach for Logan’s 5th Birthday,… Read More Tar Heels Tackle PTHS!