Since the development of the seizure disorder, I have taken significantly fewer pictures. This is partially because she has felt really bad, and partly because flash photography sometimes brings on head drop seizures in her. I have been hesitant to share these pics because throughout much of the time, she is on steroids, and she does not look like “our Maddie.” Maddie also seems not to enjoy having her picture taken anymore; she does not want to pose like she used to and often only makes silly faces once I pull out the camera now.
It has been particularly painful to look back at pictures of how well she was doing developmentally, how well she played and how happy she was before the seizures. I have just not wanted to face those things because it is so sad to realize how much Infantile Spasms has taken from Maddie.
The eye rolling episodes that were the precursors to her seizures started on December 29, 2008. By the second week of January, she was barely awake enough to play because she was having them so often. Her eye rolling turned into much stronger seizures on Feb 7, 2009. The diagnosis of Infantile Spasms was made on Feb 19, 2009 and we immediately started the high dose steroids. The pictures below are some of the few I have taken since the onset of seizures. Note the fact that our princess finally has some hair!