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…