Always Horizontal

Anna assigned the task for writing this post to me . . . several weeks ago.  Before the season of expressly giving thanks gets too far behind us, I wanted to make sure I put this post into writing.

We are thankful that our daughter is in good health.  Here's the story:

After approximately two months with our little babies, we began to notice that our daughter Alden had some peculiar eye movements--her eyes would intermittently move together in rapid, horizontal movements back and forth.  The movement is a quick burst and is not particularly noticeable unless you are looking for it.

When we went in for a checkup, we asked about it.  And that began a series of doctors appointments and tests.  Our first visit was to a pediatric eye doctor specialist; the results were inconclusive, and we were sent to the fabulous Children's Hospital for an MRI of Alden's brain to rule out a family of conditions tied to Alden's symptoms.

The MRI was an exhausting afternoon--a complete expenditure of all emotional resources.  When the results came back, the findings were, again, inconclusive.  After a follow-up appointment with some other doctors, we had three pieces of information: (1) rapid eye movements, (2) excess fluid on brain identified by the MRI, and (3) a head circumference that is off the charts.  It could be nothing, but it could also be indicia of a cancerous condition called neuroblastoma.  As you would expect, this is when our concerns escalated.

We had a lot of doctor's appointments, ranging across pediatric opthamology, pediatric oncology, neuro-oncology, neurosurgery.   The only appointment that I want to discuss is the oncology appointment.  A humbling experience.  It is a place of great contrasts.  The office and rooms are painted with happy colors, birds, and rainbows, but there is also a bag of emergency tools hanging in the corner in case something happens.  This is a place of great hope and, at the same time, despair.  The parents and children we saw were so strong in spirit while at their physically weakest.  I will not even pretend to act like I understand it, but the appointments we had in this department were a paradigm shift in our perspective.

In the end, the doctors needed a full body MRI scan.  We didn't go into the decision lightly because of the potential risks associated with the scan, but we decided to move forward.  An MRI that takes that long requires a breathing tube (infants are sedated for the scan); when Alden came out of the scan, she smiled and  babbled a little bit.  The breathing tube caused her voice to sound raspy like a baby Tom Waits.

After the full MRI, we were able to rule out neuroblastoma and some other serious conditions.  In fact, we were able to separate the eye movements from the other indicia.  In one of the appointments, the doctors took measurements of Anna's head and my head.  Anna is in the 80th percentile, and my cranium circumference is, as the neurosurgeon explained it, "off the chart."  This explains why we had to special order my law school graduation tam--a burden I will live with for the rest of my life.  It is only natural that our daughter would have a large head.

After several appointments, we walked away with a diagnosis of benign ocular flutters.  This condition is what it purports in name to be.  It may either go away with her growth or may be something that persists  into adulthood.  Time will tell.  Ultimately, it is the best diagnosis on the list of potential diagnoses when we started the process.  We are thankful for this.

We are also thankful for all of the professionals that we met with and provided services to us.  This process took several months, but our doctors and support staff kept us informed and did not give up in trying to figure this out.  When we were in the middle of the process, our doctors from various practices were talking to one another to discuss their research and findings and what they would need to make sure we were handling the tests with the greatest efficiency.  We also saw the power of electronic medical records when they are handled effectively.  Most importantly, we know that everyone we met worked hard for our daughter (and fell in love with her smile--how could they not?).

Life is good.