Neurologist & Ophthalmologist

The past week we had appointments with the neurologist and ophthalmologist, in addition to a weigh-in at the pediatrician. After a week of "good" reports last week, we had been kind of dreading the neurologist in particular, figuring any "findings" he had likely wouldn't be as good.

Neurologist & EEG

So, Wednesday (13-Jun-2007), we went to see Dr. Bernes (neurologist). In short, he thought that she was looking "really good" - better than expected, I guess(?) - but he did want to order an EEG to try and pin-point if and what type of seizure activity might be going on. We were scheduled for one Thursday morning (14-Jun-2007), early (8AM). The picture at left is of the EEG; taken with Kim's camera-phone. It looks quite uncomfortable, but Kim said it didn't bother Evelyn a bit. ;-)

Evelyn did have some small seizures while on the EEG. It was really only outwardly visible in her eyes ("fluttering"), something we had seen & noted at home. They weren't classified as severe, but nonetheless, Evelyn's prescription dosage (phenobarbital) was increased slightly. In any event, we didn't take this as "bad news", per se, but wasn't exactly uplifting, either. Luckily, though, there was a bright spot: Evelyn had a killer hair-do! ;-)

Later Thursday, my folks also arrived back in town, after a brief mini-vacation up to Sedona, Flagstaff, and the Grand Canyon. They stayed until Saturday morning.

Ophthalmologist

Friday morning (15-Jun-2007), Kim and my mom & dad took Evelyn down for her check-up with the ophthalmologist. Dr. Peters seemed to come off her earlier - and fairly depressing - prognosis that Evelyn would "be able to see light and shadows, at best", concurring with the findings from the Foundation for Blind Children. This was a great relief to hear.

Dr. Peters did confirm that Evelyn had a coloboma in (or of?) her left iris. Colobomas of varying types are not uncommon with Aicardi Syndrome. She missed it earlier, as Evelyn's pupils had been dilated. We'd noted it just looking at Evelyn's (undilated) eyes day-to-day - showing itself as an extra "peninsula" of pupil jutting into the surrounding iris, also noticing that her left pupil rarely dilated, and also the more drastic red-eye she got in her left eye in flash pictures (occurring because the retina is more exposed). The dilation and red-eye disparity can be seen clearly above, and you can somewhat make out the misshapenness of the pupil, the "peninsula" pointing inward toward her nose. So, this caused us some concern as to what Evelyn's visual acuity in her left eye might be, but we also noted that she would often still move both eyes in tandem. Dr. Peters thought was that the coloboma itself should cause very little reduced vision, so that was great to hear! Dr. Peters also said that the lacunae were "moderate in density"; e.g. looking at a picture of a retina without lacunae, and a very severe case - Evelyn's is "somewhere in between". All in all - an encouraging visit!

In General

Last week was a little tough on both Kim and Evelyn, with the multiple doctors appointments that are a non-trivial drive away, but we're hopeful that from here on out, the appointments will be spaced out a bit more.

By way of "life in general" - it's really pretty much "new-parent life with a newborn", and all that is entailed therein - little sleep, worrying over the smallest thing (of course exacerbated by knowing there is something out there, but y'know), and all that.