Friday, August 29, 2008

Second Day Home

August 29, 2008

Aiden slept very well last night. No interruptions from nurses checking his vitals every two hours. He has had more energy today and even less pain. He's been laughing and smiling a lot. He even crawled on all fours despite the left sided weakness. He just gets stronger and stronger every day.

I just got word from Karen Ball at the Sturge-Weber Foundation that the pathologist at UCLA, Dr. Vinters, sent a portion of Aiden's brain tissue to the Blood and Tissue Bank in Maryland for a study on Sturge-Weber Syndrome. Before the surgery, I specified that I wanted to donate Aiden's resected tissue to be researched to help find out what causes this disease and maybe one day find a cure or less invasive treatment for others who have SWS.

Aiden's news story has been rescheduled to air on Monday, Sept. 1st on KABC-Los Angeles, Channel 7 (Southern California). I will also post the news clip on the website. The story is meant to raise awareness for Sturge-Weber Syndrome and to help other parents of SWS kids who are trying to decide if hemispherectomy surgery is right for their child. I would recommend neurosurgeon, Dr. Mathern, at UCLA to anyone considering this surgery. The level of care by doctors and nurses at UCLA was a huge factor in Aiden's quick recovery.

1 comment:

Jessie said...

Glad things are progressing well Rachel. Aiden looks so mature and wise beyond his years. Thanks for keeping us up to date.

Could I ask a favor. I'm trying to be a part of the SWS Yahoo group, so that I can learn about SWS for my role in the foundaiton. My membership has been pending for weeks...Any ideas?