Paytons story, my pregnancy and c-section delivery were pretty normal. When Payton was about 6 hours old she just turned blue, for ne reason that we had known of. She was rushed to Childrens Hospital in Denver and they diagnosed her with transposition of the great vessels and she immediately had a surgery to open up a whole in her heart to help keep her alive until they could do the corrective open heart surgery when she was 2 days old. She had the surgery (and we later found out a stroke during) and we spent 6 weeks in the hospital with her letting her get well enough and strong enough to go home. During her time there they found several small cysts in her brain but said that it was OK and they would go away as she got older. We took her home, and even though she seemed a little delayed she was doing really well. She had her first seizure at about 3 months old. I was holding her and noticed her get very rigid and then go kind of limp and get very tired. I thought that it was a seizure from the get go but we didn’t take her to childrens until we had been noticing them coming more often. We were sent to a neurologist there who had a full MRI done on Payton and reassured us that her seizures were caused by the right frontal brain damage that she has from the stroke. We tried trileptol for a while with absolutley no success, and also Keppra with limited success. I finally asked the Dr if he thought that they could be infantile spasms after doing some research on my own and he kept just upping her dosage and wouldn’t listen. I think this delay in diagnosing her may be why she is still a little behind where we believe she should be. We finally asked to see a different Neuro at childrens and she immediately agreed that they appeared to be infantile spasms but that Payton was lacking one of the key brain wave patterns that is usually seen even when a child is not in the midst of a spasm. So we were checked into the hospital for over a week while to have her monitored and to catch her episodes on the machines and of course they were the infantile spasms. So we started her on the Vigabatrin which was really awful stuff, but at the time our only option becuase her cardiologist wouldn’t clear her for the ACTH treatment. We tried the Vigabatrin for several weeks with limited success and finally were able to get the OK for the ACTH. So back to the hospital where we had to spend the first 4 days of her treatment so that the cardiologist could monitor her and make sure she was going to tolerate it OK. Thank goodness it worked and her seizures mostly went away (from 12 a day to one or two a week). It was shortly after this that because of the Vigabatrin she had to have an extensive eye exam and the Opthamolgist noticed the lacunea in the backs of her eyes and brought it to the attention of the neuro. They spoke to another Dr. and came to the conclusion that Payton had Aicardi. So she was diagnosed with Aicardi when she was about 15 months old, so quite a bit later than most Aicardi girls. So here we are now, she is only on the Keppra to maintain good control of the seizures but she still seems to have some break through episodes, but they are not infantile spasms just seizures. She gets OT, PT and speech once a week, and vision therapy once a month. Her Dad made the tough choice to quit his job and stay home and be with her full time and I kept my job since I have a lot more potential for advancement there. We have 5 kids all together Katie 11, Robert 10, Ian 9, Adrianna 8 and Payton is of course our youngest and our last. She can sit up by herself but is not quite to getting to sitting by herself, she has started to support weight on her legs better and we had her cast for braces a few weeks ago, and will be getting a gait trainer soon too. She is learning to sign but still non verbal. We are all learning that even though there are some big ups and downs with our little Payton that she is a true blessing and we cherish every day and every moment that we are able to have with her. Her smile and her laugh are so contagious I don’t know how anyone could hear that laugh and not smile too. She likes to play with our cat Zanzibar and strangely the cat thinks that Payton is fun to play with too!