| My story, is actually my Granddaughters story! At the very young age of 3 months, I realized she was having seizures. My daughter, who has epilepsy, is the reason I recognized the seizures. I called my daughter and brought the baby to the ER. There we demanded that they do a CT on my Grandaughter. The doctor finally came in and was as white as the walls! He told us that we were leaving for children’s hospital in New Orleans ….. NOW!! My 3 month old Granddaughter had a mass in her head that was massive! So, after a diagnose of a tumor, possible AVM, angiogram at 4 months…. they discovered it was a CCM. So, since she was so young, they wanted to try and wait until Lola was 5 months to do surgery. Well, she had the surgery, they had to remove the lower part of her temporal lobe due to tumor growth. She also suffered a stroke. We continue to take her to physical/occupational therapy for left sided weakness. Our neurosurgeon told us that she is the youngest person to ever have this type of surgery! Our GOAL is to get OB/GYN doctors to screen pregnant Moms for this!! Lola will be 7 months old this month…. had we not discovered this ccm…. she would not have lived to see her 6 month mark!! She and her Parents are the bravest people I know!! |