When we were in the hospital with Reagan, we had the most amazing nurse, I’m going to call her Kate. Kate had the most incredible demeanor. She was calm, always smiling and confident, she was the exact opposite of how we were feeling. After Reagan’s metabolic crisis, Kate helped us set up a conference meeting […]

I absolutely hate it when Reagan gets sick or has a fever. She battled a low grade fever from Friday through the weekend with no other symptoms. One day she sneezed three times (I’d hardly call that a symptom) and one day her eyes were watery for about five minutes (what the heck is that?!). Due […]

After Reagan had her metabolic crisis (due to her genetic disorder, Glutaric Acidemia Type 1 or GA-1 for short), she had an MRI…and while we were waiting for the results, I just knew something was so very wrong. When Reagan woke up briefly, probably 18 hours after her seizures, she smiled but was so limp that […]

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 […]

Is what I was thinking as I took a walk with Reagan in our neighborhood and met a new neighbor. Other than the fact that she seemed around my same age and had a daughter just two months younger than Reagan, I thought, “well…that’s where the similarities end.” Her daughter had blonde curly hair like […]

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 […]

Today is Nov. 8 and while that day may not have a lot of meaning to you, let me tell you why it’s important to me. Nov. 8 is my late Grandmother’s birthday. She was awesome. On Nov. 8, 2012 we got the call from our adoption agency that we were matched and expecting a […]

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 […]

On Thursday Reagan was scheduled for a 24-hour EEG. Rob and I had been dreading it ever since it was scheduled. So much so that we rescheduled it for a later date. But Thursday finally approached and we geared up to go. We brought the bouncer, the pak and play, her high chair, a million […]