Riley Norton's Weblog: Walking by 2?

Monday, August 16, 2004

Walking by 2?

If Riley is walking by the time he is two years old, that would be a big accomplishment, according to the physical therapist who evaluated him this morning at Kaiser. Therefore, she wants us to concentrate on getting him to crawl so that he has a better, faster way to explore the world. We have some exercises that aim to strengthen his neck and upper-body muscles, and we need to keep propping him against furniture to strengthen his legs as well. We have another appointment in four weeks.

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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.