Day 13

Today began in a rather disheartening way.  Henry's gag reflex from yesterday disappeared, we observed several suspiciously seizure-like movements, and his nurse had to bring out a heat lamp to keep his body temperature high enough.  Even his doctors were showing some signs of frustration and decided to proceed with a battery of tests to rule out a couple of extremely rare diseases that were not immediately suspected.  The challenge is that Henry's symptoms do not show consistent progression in any direction, and his clinical signs do not seem to match the tests of his brain.  

However, in the late afternoon, Henry turned the day around.  He was given yet another EEG, his fourth.  For the first time, the EEG showed no seizures.  We were happy with the result, but we were still looking at a cold baby with jerky leg movements.  Then he warmed up and, more importantly, woke up.  We spent a wonderful evening with all four grandparents (my parents are in from Pennsylvania) and an alert, responsive Henry.  Meade and I are both feeling relief and a renewed sense of optimism.

In the meantime, Henry achieved an important milestone.  He is now receiving 75 mL of milk at each feeding, and for the first time since birth does not have an IV!  

Henry has another big day tomorrow.  He has an appointment with the occupational therapist, a test of his spinal fluid, and a follow-up MRI.  Wish him luck.  

We enjoyed visits from all four grandparents, our friend Erin, and cousins Michele and Charlotte.  

Some visitors

Look, Ma, no IVs!