The Road Block

Despite everything that Rhythm went through in that tumultuous first month of her life, once she was home, she was doing great.  We always looked at her development in terms of her being two months premature, but despite that, she seemed to be progressing normally and doing all of those fun things that babies do.

In October 2015, Rhythm became a US citizen.  On this trip to the Philippines, I saw a huge change in Rhythm from that time that we had brought her home from the hospital.  She was adorably chubby, she smiled and laughed a lot, rolled over and even seemed to have a sense of humor.  I left there in early November really pleased that she was progressing so well.  There were so many potential effects from her prematurity, and it felt like we had really dodged a bullet.

That trip was the last time I saw that version of Rhythm.

One morning in January 2016, Jen sent me a video of Rhythm.  I watched and didn’t quite grasp what I was looking at.  Rhythm was making movements that seemed unusual, and each time those movements were made, she had a scared look on her face.  Jen was sure something was wrong.  I wasn’t sure what to make of it.  We monitored it and Jen sent the video to her doctor.

The doctor didn’t seem very concerned at first, but these movements only increased and Rhythm seemed more in pain each time it happened.  Jen was becoming frantic.  She knew this was something.  Some of her friends who had watched the video made an observation – Rhythm was having seizures.  These weren’t violent seizures, but calm ones.  As it turned out, these calm ones were even more dangerous.

Jen spent a lot of time researching online and watching these signs that Rhythm was displaying.  It became clearer and clearer that these were Epileptic seizures, a type called Infantile Spasms.  This type of epilepsy was rare, but extremely dangerous.  This not only impacted her brain, but would affect her development.  She was 8 months old now, and not doing certain things that babies her age would do.  A trip to the hospital and an electroencephalogram would confirm the diagnosis. 

Rhythm’s future was about to become a lot more complicated and troubled.  For some babies, Infantile Spasms can be fatal.  Many years of medication were up ahead.  Dangerous, awful medications that will probably do more harm than good.  The Road Block to a normal childhood had been put in place.

NEXT BLOG TOPIC: PHARMACEUTICAL HELL