Ava Update

Last week, after 5 hours at the ophthalmologist, we confirmed that Ava has cortical visual impairment. While her eyes are functioning, her brain is not properly processing what her eyes are seeing. We can't tell what, if anything, she actually "sees". This isn't a surprise to us since most of her development has stopped since her seizures began. So we rub noses, kiss her cheeks and sing songs in to her perfect ears. Her awake time is limited and our glimpses of her eyes are rare. So we massage her and move her joints, rotate her in bed and try to put her in as many "normal" positions as possible - that way, if any development is occurring, it won't be lost. Today's lab tests didn't provide any answers as to why she's so sleepy, so if she doesn't wake up more over the weekend we'll get admitted next week for an overnight EEG to see if she's having seizures we aren't detecting.