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NIH Day 4

November 9, 2018

Lilly had her sedated procedures today.  She was not happy about it at all.  She had to be fasting, and cried basically from the time she woke up till the anesthesiologists sedated her.  She hated her IV.  I felt so bad, and my mama heart was hurting for my baby.  The only thing that would console her was the Million Dreams song from The Greatest Showman.  Her procedures went fine, and they didn’t have to intubate her.  She took a while to wake up, and was pretty grumpy when she did wake up.  


Cecilia’s day was pretty busy.  She had an EEG, a neurology appointment, and an OT evaluation.  Her EEG and neurology visit were normal,  and OT was what we expected.  Jon and Cecilia found the chapel at the hospital too.


Jon and I have also participated in a sub-study this week.  This involved blood work, a physical and health history.  They are hoping to find correlations in the blood work to the girls to help find bio markers.