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

Rob and Anne-marie

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 […]

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