At our last update, we felt things were improving, though slowly. Unfortunately, since Thursday evening Maddie has gotten less responsive to us and is basically sleeping or nursing all day. We have begun to see her seizures coming back (they stopped when she first got the fever that led us into the hospital). They are different than before though, and sometimes it appears that she is “absent” while she is awake, so that may indicate the development of a new seizure type. On Thursday, she was talking, played a little, and even ate a handful of cheerios. Since that evening, she has barely interacted with us at all.
Needless to say we are devastated. She just survived an incredibly life threatening infection, and now the seizures seem to be taking her from us. We have had an EEG, which did not fully explain what we are seeing. We will probably have another MRI of the brain early this week to see if there is any new damage. We are actually taking her off her seizure meds (since it does not seem to be working anyway) in hopes that we can see what is really going on right now.
Please keep her in your prayers that we begin to get some interaction with her and that the seizures do not get too bad.
Liz, Brandon, and Maddie