Remaining humble during the storm

I’m sitting here, sipping coffee, watching a waiting room full of people anxiously awaiting news about their loved ones who are upstairs in the operating room. A year ago, I wouldn’t have had the faintest idea of what that feels like. Everyone in my family has always been relatively healthy. Those circumstances always made me…

Month 4- A new treatment plan

We met with Maddi’s Neurology Team last Tuesday to talk about her progress so far,┬áJason and I expressed our concerns that Maddilyn had seemed to be getting no better since her last round of IVIG and Steroids. For the last 4 weeks she had been consistently irritable, aggressive both verbally and physically, and starting to…

What happens when the smoke clears?

It’s been three months since Maddilyn was diagnosed with NMDA Encephalitis.┬áThe initial critical parts of her illness are over, and now we are learning how to settle into the flow of managing a chronic condition. It’s tough; most days. She is getting better every day. In large, she’s regain almost all normal functioning. She struggles…

Living with AE

It’s been three months since Maddilyn’s diagnosis. Three months since we rushed her into the emergency room, catatonic; scared, and not really sure what was going on. It’s been three months filled with doctor’s appointments, medications, needle pokes, hospital stays, exhaustion, frustration, sadness, and joy. Three months since our lives were turned upside down. I…

Update

I’m working on getting an update posted in the next couple of days. A lot has gone on in the last couple weeks.  For now, I want to post this picture to show how far Maddilyn has come in the last three months. In the first picture, it was the day of her VPK graduation….