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Tuesday, March 20, 2012

A quick update

There is a much longer version of this story, but considering I have so many friends and family interested in knowing today's results, it will have to wait for another time.  As many of you know, Jude spent the first five days of his life in the NICU and underwent an MRI, an ultrasound, countless blood and hormone tests and a battery of other evaluations.  Neurologists and an opthamologist examined him and radiologists studied his MRI.  Just when Joanna and I felt dang it, the other shoe is going to fall, Jude would come through with flying colors.

Needless to say, the stay was an exhausting experience for any parent, much less parents with two other sons at home.  Thankfully we had great support through our parents who physically cared for the older boys so Joanna and I could be with Jude as much as possible.  If you've never experienced a NICU from the inside, it presents far more complications than the mother-baby units in terms of what it allows and restricts. Again, a topic best kept for another day.

Today was really stage two of this process as we were filtered into the Children's Mercy system locally and met with some of the best doctors in the metro, all specializing in pediatric care.  Although we were discharged from the hospital after Jude's birth with optimism, there were some things remaining to be settled.  Jude's initial diagnosis was and remains bilateral microopthalmia.  This is a severe underdevelopment of the eye, in this case, both (bilateral).

The morning began with a visit to pediatric neurologists, who reexamined his MRI and did a physical assessment too.  He, thankfully, continues to check out just fine in this department, but as we are reminded his brain is still young and development (which is evident) is different from function (which an MRI doesn't truly speak to).  There are no indications to say he is not healthy neurologically, but there seems to always be a fear when a major organ (the eyes in this case) are mal-developed-especially one that connects directly to the brain.  

The optimism of the morning led to the tough realities of the afternoon.  The pediatric opthamologist shined a bright light into Jude's eyes to see if there was any light recognition whatsoever.  As was the case on day 2 of his life, there was no reaction.  We weren't under any impressions he was not blind, but hearing it was nonetheless tough medicine to swallow.  On a related note, Jude has been sleeping terribly at night.  The doctor confirmed this is a typical occurrence in blind people.  When you can't see or perceive light, your body can't get on a natural rhythm.  He will likely be prescribed melatonin to regulate his sleep.  

As we expected, we have been advised to meet with a pediatric oculist to fill the space in Jude's eye sockets so facial development will not be stifled.  We meet on Monday.  A growing concern of mine is something that was acknowledged, more so in passing, on the MRI: abnormal growths beneath and amid where eyes would typically sit.  They may well prove to be no more than a medical nuisance, but they are concerning as the opthamologist consulted a partner on them, who said he'd never seen them before in a baby Jude's age.  Again, there's no reason to assume this is anything bad- aside from the space they are taking up which will be needed for the eventual ocular conformers or prosthetics.

And finally, we were advised again to consult a geneticist, whom we thought we were supposed to meet today- but turns out that was not in the works.  This is the part that troubles me the most, probably mostly because I didn't pay enough attention in science classes in high school.  But, the doctor cautioned, as others have said before, broader genetic syndromes are often found when something like bilateral microopthalmia takes place.   This took the wind out of my sails after a good neurological appointment.  Joanna is much more optimistic, and probably more reasoned than me on this.

In summary, we have taken two steps in our new shoes down our new path.  There are 1,999,999,998 steps yet to take.  The more time we spend in hospitals and with doctors the more we learn to change our expectations from the doctors.  Don't get me wrong, we have absolutely loved the individual physicians we've worked with, but no one in the health profession can or will say, "He looks great!"  Every time he looks pretty good, they say, "But, I'd still like you to talk with this specialist..."  Aside from the eyes, they haven't found anything to state otherwise and if/when they do, we'll go from there.

As always, pray for Jude.  Pray that he continues to grow strong and thrive at home.  Pray for his brothers that they will be great (as I know they are) to promote their brother's special gifts.  And, pray for his parents (especially this guy) that they will be steadfast in their fight for Jude's best interests, until Jude is strong enough to assume the fight himself.  St. Jude: Pray for us.  

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