I had to make a video to fully share how Rob and I are reflecting on 2014. We hear allllll the time from people at how amazed they are with regard to Reagan’s progress. We are amazed too. I think it’s really important to remember where she was though, what she lost and how much […]

What I mean by that title is…as a family, let’s all go to bed at 8:30 p.m. and…SLEEP! Tuesday Reagan had her Nemours appt. and b/c she’s doing well eating (she has about 150g of food/day) and b/c she’s growing like a weed, and b/c she’s been able to tolerate seven oz. of formula via G-tube […]

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 […]

Today at therapy a little girl, about five years old, walked by Reagan as she was in her walker and pointed and laughed at her. It was quick, it was as she passed by. And the little girl was being led out by her therapist to the waiting room to whoever was there for that […]

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 […]

I don’t feel like writing…I just want to go get an iced coffee, a pair of sunglasses and pick up a few things at Publix. But today, the prompting to write something has been so strong in my head. Reagan is with Rob at therapy, I was about to walk out the door…I even kissed […]

Since the Dear Humana post, and email to their corporate relations blog post, I was contacted swiftly by Humana. First by customer service, and then by their social care department since I posted to social media. In our minds, Rob and I had decided to stand still (especially after those waves) and allow God to […]

I didn’t have a very good day the other day actually, the three weeks leading up to last Wednesday, Thursday and Friday were rough. Wednesday: formula catastrophe at almost midnight Thursday: notification our therapies were being denied by insurance at Reagan’s appointment (vomit) Friday: absolute denial from insurance for any more therapies for Reagan for the remainder […]

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 […]