My Maddilyn, It’s been one year. One year since we rushed you to the hospital in the middle of the night. Daddy held you in his arms in the backseat. I could hear him telling you that it was going to be “ok,” he was trying to keep his voice calm, I was crying, Daddy…

I consider April 28th, 2016 to be the “official” start of this journey, although Maddi had been sick for many months before. On April 28th, 2016, Maddi casually stepped on the scale in my bathroom as I got ready for work: “38.5 Mommy” Wait? 38.5lbs, that’s not possible- I thought to myself. Just weeks previously…

Maddi is getting a follow-up EEG this morning, as her last one was about 6 months ago. NMDA-R Encephalitis makes Maddi susceptible to continued seizures, and its unclear how long this will be an issue, which is why her Neurologist will keep her on anticonvulsants for a minimum of two years. At the onset of…

When we went for our surgical consultation last week, the surgeon asked if we wanted to keep the caths once he removes them. Maddi: “eww, that’d be gross!!” Surgeon: “some kids are really attached to their lines!” I laughed with my best friend about this later on; what an odd thing to have sentimental value….

Today Maddi had her external catheters replaced with an internal port. The internal port will allow long term vessel access without having to fish for, or damage a vein. The surgery itself was very brief, and the doctor’s reported that the placement of the new line went off without a hitch. Due to the irritation…