Neurosurgeon Check-up

Read my lips: No new neurosurgery!

For now, anyway - hopefully this will go off better than Bush I's promise! ;-)

The "main event" this pasts week was Evie's check-up with the neurosurgeon (21-Jun-2007), which was primarily a "one-bang" MRI and a subsequent review of the results by Dr. Moss. This was a big check-up for her, as we were really hoping for (obviously) "no new surgery".

As you can tell, we got our wish! Again, "For now" - but we'll take it! :-)

According to Dr. Moss,

• The cysts continue to drain - in particular the cysts on the left that could not be reached during surgery!
  
• Overall, "Great progress" and "Things look really good!"
• The next check-up is now in two months (60 days), another great indicator of "things are looking good"!
  

In any case, after we've got all the MRI results, I'll try and get a "comparison" up, as most people haven't seen the before, after, etc. That'll take a little more time to put together, so I'll save that for another post, to go ahead & get this good news out. :-)

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.

Good news: FBC & Weigh-in

Just a few quick updates....

Last Wednesday (06-Jun-2007), we had a visit from the Arizona Foundation for Blind Children (FBC, but currently a dead link) along with AzEIP, Arizona's Early Intervention Program. While the AzEIP visit was largely paperwork, we had some encouraging news from the FBC check-in. Namely, we received some validation of what we had thought we'd been seeing, but had been a little afraid to believe: That Evelyn does seem to be able to see "some stuff"! Recalling our initial diagnosis ("She will be mostly blind, but will probably be able to see light and shadows."), this was arguably good news!

Kim and I both felt that we kept seeing Evelyn look at things, but you get really cautious about letting yourself believe it -but having a semi-professional (albeit non-medical, but a full-time FBC volunteer) come to the same conclusion and "validate" what you think you've been seeing - really helps. In short - we may not know for some time how much Evelyn can or cannot see, but having that ray of hope validated helps immensely.

Also last week, we had an appointment with the pulmonologist, a.k.a. "sleep apnea doctor". We also received encouraging news on that front, that in reading the monitor, no "apneatic episodes" had been seen, and that it was reasonable to hope that if things went well over the next month, we might be able to rid ourselves of the apnea monitor. Woo-hoo!

In other news, we'd had some troubles or concerns over Evelyn's weight over the past few weeks, with regard to her not gaining enough. However, she had another weigh-in today at the pediatrician, and we've been able to pork her up pretty well - she's now 8 lbs 10 oz. She's also put on another inch for 22". So - also good news!

On tap this week are the neurologist, ophthalmologist, and a visit/follow-up from the AZ NICP. So, a busy week, to be sure, but hopefully we will get some more good news.

introduction

Welcome to the Evelyn's Army blog. This will just be to have a place to post updates for people that are interested in "how Evelyn's doing" on a more regular basis. Comments, of course, are welcome.

The main site is http://www.evelynsarmy.org/. From time to time, we'll consolidate some of the "news" into a proper summary or update under "Evelyn's Story".

For now, though... Thanks for reading & caring!