Riley Norton's Weblog: Ready to toddle!

Wednesday, December 01, 2004

Ready to toddle!

After a two-and-a-half-week hiatus, Riley made huge strides (literally) yesterday!! He took a couple of steps three or four times in a row at a friends house, and then when Ken got home, Riley was ready to show off to Dad!! I stood him up facing me and I had to quickly keep backing up so he could keep coming towards me (Ken counted 10 steps)!!! I backed into the wall, and that was that. Amazing!! I guess he officially needs a pair of shoes.

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Riley's Medical Condition

Riley was born with congenital heart defects that were detected shortly after birth. He has a condition called heterotaxy which means his internal organs are reversed. His heart is on the right side of his chest. He is also missing a spleen, a cardiac-related condition called asplenia syndrome. Riley's heart only has a single ventricle and a common valve. Before treatment, oxygen poor blood mixed with oxygenated blood causing severe cyanosis ("blueness").

There is no cure for Riley's disease but a three-stage palliative treatment is commonly performed. A few days after birth in April 2003 surgeons at UCSF performed the first stage, a BT Shunt. In May 2004 surgeons performed the Glenn Procedure. In March 2006 Riley underwent the Fontan Procedure, the third stage. Riley developed protein losing enteropathy and in March 2007 received a Fontan fenestration which failed, followed by the Fontan takedown in April 2007.

In 2014, Riley began developing arteriovenous malformations in his lungs. That's an indication that his Glenn circulation is not holding up. In October 2014, Riley went to Stanford for a 1.5 ventricle septation repair.