Sunday, October 21, 2007

thoughts & prayers

Lots of folks in "the army" are of the praying persuasion, and others are not.

We would not be true to ourselves if we denied that our (Christian) faith plays a large role - perhaps even the biggest role - in helping us out with all this. At the same time, neither of us is really very inclined to make pointed sermons out of anything. But, for those wondering "how we deal" - that's a large part of how.

In either case, a number of people have asked what to pray for, as far as Evelyn goes. Others want to know what to hope for, what to wish for, or just what to generally "send positive vibes for".

In answer to that, some "specific yet general" requests are below. "Us" here means Daniel, Kim, and Evelyn. :-)

  • For us to be strong
  • For us to be happy
  • For us to focus on the positive
  • For us to be prepared for the worst, but hoping for and working hard towards the best
  • For us to get enough sleep and to generally "remember to take care of ourselves"!
  • For Evelyn's doctors to be "on top of their game"
  • In particular, her neurosurgeon (Dr. Moss) and neurologist (Dr. Bernes).

Of course, anything late-breaking will be on the blog.

Everyone thinking of & praying for Evelyn really, really means a lot - and it helps. If we can return the favor - please let us know.

Saturday, October 20, 2007


As discussed in evelyn's story, Evelyn was diagnosed with Aicardi Syndrome when she was 5 days old.

what is it?

In general, more detailed information may be found on, or linked to from, the Wikipedia page on Aicardi Syndrome (of which Daniel has been a recent active editor, and plans to continue to expand it), or see the Aicardi Syndrome Foundation.

In brief, though...

Aicardi syndrome is a rare genetic disorder, with about 500 reported cases worldwide. It's Daniel's own personal theory that it may be a bit more prevalent, going un- or mis-diagnosed in more developing countries. In any event, in almost all cases, it affects only girls, except for a very few known cases of boys with an additional genetic disorder that gives them an extra "X" chromosome.

At this time, a specific gene or chromosome has not been isolated. This means both that it cannot be tested for, and that it is a "clinical" diagnosis; a recognition of outward signs or symptoms. Aicardi Syndrome's "classic" markers are:

  • Agenesis of the corpus callosum (ACC), partial or complete - the failure of the thin band of tissue connecting left brain and right to form, or form only partially
  • Lacunae (lesions) of the retina
  • "Infantile spasms", or basically, seizures

It also commonly includes symptoms such as cysts in the brain, other defects of the eye, and similar related issues.

what does it mean for evelyn?

Or in medical terms - "What's the prognosis?"

At this point, it's very hard to say - as the old saying goes, "time will tell". Symptoms don't usually become pronounced until several months of age, and as of this writing, Evelyn is still quite young. Generally-speaking, though, the range out outcomes isn't terribly great, but it is also highly variable.
  • Moderate to severe developmental delays
  • Eyesight ranging from simply "less acute" to near or even complete blindness
  • Seizures on a regular basis (multiple daily are common)
  • Shortened lifespan (median ~18 yrs; average of &10)
Additional complications can sometimes include:
  • Scoliosis
  • Gastrointestinal & feeding issues
  • Respiratory problems
what does it mean for daniel & kim?

As you might figure, getting a diagnosis with any one of the above symptoms or outcomes as a new parent is enough to send you off the ledge; let alone all of them together! We certainly had our time of that, and we're also sure that we're not through - we will continue to have our "up" days and "down".

Largely, though, it's just a fine reminder to take things a day at a time. Evelyn could come and surprise us all, or things might go exactly according to "average prognosis". The doctors might end up dead wrong on their diagnosis, or they might end up being exactly right.

So in the end, for us, we need the same basic things pretty much any parent does:

  • Take things one day at a time.
  • Be ready and prepared to provide for your child's needs...
  • ... While at the same time not placing limits on them.
  • Stay positive.
  • Be strong.

And of course, being able to boil it down and oversimplify it doesn't make it any easier to do. But, hey - it's a start. :-)