We don’t live too far from UCF and so we often drive through campus as a little detour when Reagan is sleeping and we need to kill time. Driving THE campus brings me back to when I was a college student. You learn a lot about yourself when you’re away from home, trying to find your […]

We have some new visitors to the blog, FB and Instagram pages so I wanted to give a quick update and overview of why we’re doing these auctions and what GA-1 is and how Reagan has been affected. Reagan has Glutaric Acidemia Type 1 (GA-1), a rare genetic disorder that was found on her newborn […]

The LORD says, “I will give you back what you lost to the swarming locusts, the hopping locusts, the stripping locusts, and the cutting locusts. It was I who sent this great destroying army against you. – Joel 2:25 I am SO excited to write this update! Tuesday, Rob and I drove to Jacksonville and […]

It’s 11:00 p.m. I open the door to Reagan’s dark room and step on the wood floors, hoping they don’t creak too loud. Rob walks in behind me, IV pole in hand…four little paws tap behind Rob. Reagan’s room is dark. The ocean sound machine is on, and her lullaby playlist, that we’ve played for her since […]

My heart gets some heavy sadness every so often. The best way to describe it is to watch this short video… That video just encapsulates what I miss, which is, the normalcy of Reagan growing up. Although, we had to keep her on a special GA-1 diet and that was out of the norm, she was meeting […]

It’s easy to choose joy when you’re in the midst of easy and happy circumstances. But our circumstances, are hard. I feel like we never have time to just enjoy a moment. We move from task to task, appt. to appt. When Reagan was having her surgery and we were waiting, it was very odd […]

I seriously love my daughter. She’s a total rockstar. She is rocking therapy, trying to sit up more and more, rolling over, sleeping on her stomach, playing while on her belly like it’s no big deal and she’s eating food (not a ton, but a few tablespoons for breakfast, lunch and dinner). Unconditional love. I learn […]

I am SO tired, but I am forcing myself to write this blog b/c I have to share the good that we experience. Today our family unit went to Nemours to see Dr. Ried. She is the Division Chief of Physical Medicine and Rehabilitation at the Nemours hospital, and our genetics Dr. had her squeeze us […]

I think it’s inevitable for Rob and I to play back the 13 months of  Reagan’s perfect health. We both ask ourselves, “did we do something wrong?” Rob beats himself up over the food…he prepared the menu most days, he made her formula…but we were following everything to a T from our genetics Dr. and […]

Rob and I came home with Reagan on Saturday after being in the hospital for 12 days. We needed those 12 days in the hospital and I can honestly say the past two weeks have been the hardest weeks of my entire life. The marriage vows “for better or for worse” are definitely being tested right […]