Love-Hate Relationship

I've decided I have a love-hate relationship.....with the Internet, that is.  Have you ever looked something up on the web, and then instantly wished you hadn't?  Let me back up....  So I finally got around to getting copies of Gianna's MRI and CT scans on a CD today.  Although I can't really make out 90% of what the images are, they each have a written report giving lots more information than I had ever understood about Gianna's brain and spine.  The reports contain all the detailed terms like "slit-like ventricles", syringomeylia, and colpocephaly (that was a completely new one to me).  Of course my next step was to look up all those terms to find out more about what they really mean. 

I distinctly remember thinking it was a GOOD thing when the neurosurgeon told me that Gianna's ventricles looked like "slits" after her shunt surgery.  After all, that was the point of the shunt, right?  Her ventricles were previously enlarged with fluid, so to look like slits must mean that they are now nice and small.  That's correct to an extent, but what I didn't know was that ventricles can actually be too small, and there is something called Slit Ventricle Syndrome.  Some of the things we've been told Gianna may develop as she grows (severe migraines, nausea/vomiting, lethargy) are all symptoms of this syndrome.  I read a case report of a 5 year old little girl who had this syndrome, had a shunt revision surgery due to the symptoms she was experiencing, and died 22 hours later due to a cerebral edema.  I read about the vision problems, pain, weakness, and paralysis developing as syringomeylia progressively destroys the center of the spinal cord, and I read more about the severe neurological deficits associated with Gianna's Chiari III Malformation.  And so I hate you, Internet.  A lot. 

But here's the thing....the internet, and specifically this blog, also allowed me to "meet" two other mothers this week who have daughters with encephaloceles.  One has a daughter named McKenna who is 18 years old and lives in Minnesota.  McKenna's mom has subsequently adopted 9 (!) more children born with disabilities.  You can read about their incredible, inspiring family here.  The other mom's daughter is named Grace.  Grace was born just 4 days ago in Mississippi.  Her encephalocele closure surgery was this morning and I've been saying prayers for her all day.  You can read about precious Grace here.  Without the internet I would have never gotten to talk to these two amazing women, to get to celebrate the joys of their children with them, and would have very likely lived my entire life without EVER having met another family with a child born with an encephalocele.  And so, Internet....at the end of the day, I think I love you after all.