A blog about us. our lives. our struggles. our victories.

Rob and Anne-marie

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 […]

I am super excited to write this update. After the Humana situation, our friends organized an Instagram auction for Reagan to help us cover the cost of her continuing care. The auction was a huge success raising over $1,800, not to mention close to 400 people learned more about Reagan’s story and we upped awareness for […]

We received Reagan’s EEG results on Thursday. NORMAL!! Her Neurologist was so pleased. No seizure activity at all…he said that’s either due to her brain normalizing and calming back down, OR the medications are working so much that no remnants of seizure activity can be detected. Rob and I truly believe it’s our Great Physician […]

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 […]

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