Lillian Grace

Lillian Grace was born December 26, 2011. She is 12 and a half weeks old. Lilly is my first baby and She was unnoficially diagnosed with AS a week ago when we took her to the ER for the second time and asked for an MRI. The doctor came back and said there are two different things wrong with her brain and those put together are called Acardi syndrome. We are still waiting for an appointment with a pediatric neurologist on March 27th and another MRI which is on April 3rd.
Lillian was born with a noticable coloboma in her right eye. We took her to an eye specialist when she was a few weeks old who said she actually has coloboma in both of her eyes and some yellowish white circles in her eyes that he didnt know what they are. He also said that he couldnt tell us much of her vision is effected until she was 3 months old, when her eyes were more developed.
She started having seizures when she was 5 weeks old. They started off mild but as time went on they were happening more often and getting longer. The seizures were dismissed by her pediatrician, who had nothing to say about them except i’ll refer you to a neurologist. Her appointment with the neurlogist was 4 weeks away and i had no idea what to do. i couldnt sit back and just watch as her seizures were getting worse. I took het to the ER where they just sent me home with Keppra. At first it seemed to be helping but after a few days she up to 12+ sezures a day. Once we went to the neurologist they did an EEG that they said was definitely abnormal and she wanted to up the Keppra and get an MRI, but she didnt tell us what was wrong with her. Again the MRI was 4 weeks away and the Keppra wasnt working so i took her to the ER a week later and demanded an MRI. I wasnt gonna let this get pushed off anymore. We got our answer finally but it wasnt really the answer we were looking for. She is now on Topamax and a higher dose of Keppra.
At first I was really scared and depressed that this was happening to my baby girl. I still dont really know how severe her case is but i have lots of hope and faith in her. She gas been able to roll over since the day we brought her home and every day i am working with her to hold her head up, she loves to make lots of sounds all the time and im always seeing her grow and get stronger more and more. I am willing to do anything in the world to help her be the happiest little girl in the world! No matter what, she is absolutely perfect to me and always will be!