Research Rex

This week Rex had the opportunity to participate in a research study about his rare genetic syndrome, so we traveled to Tennessee for a couple of days of testing.  Spending 16 hours in the hospital over the span of two and a half days was exhausting for all of us, but Rex did so very well.  He charmed everyone we met with his bright smile and energetic personality and endured even the painful and uncomfortable testing without more than tears.

The blood draw was the most invasive procedure Rex had to brave, so you may wonder why I took this picture.  The reason is that this is the moment Rex is being immortalized.  The blood drawn here will be sent to a repository where it will be preserved and continuously grown for research.  Rex's cells will stay alive there forever. 

Scheduling an EEG at 10:00 am was probably not the smartest thing the researchers did. I consider it a minor miracle that Rex was able to fall asleep for the time required to get the necessary data.

The most unexpected news we received from the research team is that they believe Rex is affected by a second complex genetic syndrome in addition to the one we already knew about.  They have a theory on which one it might be, but sent us home with a list of tests that should bring some clarification.  So, once I get through what I anticipate being a scheduling nightmare, my little love will have to undergo more testing.  It really breaks my heart because it changes nothing in terms of his developmental prognosis, but could add a few physical complications that may need to be addressed.

On Friday afternoon we had some down time, so we enjoyed a lunch at Rendezvous Restaurant.  This is the wonderful babysitter who traveled with us and made sure Emilia enjoyed herself while we were at the hospital with Rex.

Then we went to Mud Island to explore the exact scale model of the Lower Mississippi River.  We had fun.

Oh, and we hit two milestones on this trip.  First, Rex took off his own diaper for the first time.  I am very much on the fence on whether this is a good or a bad thing.  And, while we were at the hospital one morning, Emilia, at the hotel, broke down crying and asking for mama, mama, mama.  I love that she missed me and wanted me.

Now on to a new week which, if all goes well, should be rather calm.