Annika was born on March 19th, 2012 after a normal healthy pregnancy. She was a tiny peanut at 5 pounds and 13 ounces, but healthy. At her first pediatrician appointment, her head measured small, but since she was so tiny her doctor didn’t worry too much. Her head was still measuring small at her one month appointment, so the doctor decided just to keep an eye on it. At this point we had no concerns because she was eating well. When her two month appointment came around, her head had really started to fall away from the growth curve and the doctor ordered a head ultrasound. When the ultrasound was just about overthe tech called in the radiologist; neither the tech nor the radiologist could find Annika’s Corpus Collosum. They decided that she needed to have an MRI. Three days later we took Annika in for a sedated MRI and the results confirmed- Annika had complete Agenesis of the Corpus Collosum (ACC). What that means is that she is missing the band of tissues that connects the right and left sides of her brain. What that means for Annika we don’t know yet; she is developmentally delayed as of now.
After we got the ACC results, our pediatrician suggested that we bring her to see a neurologist and get genetic testing done. We met with the neurologist and she explained allthe ins and outs of what to expect with her ACC. As we were adjusting to what our new world was going to be with ACC, we got our genetic testing results back- she had a chromosomal abnormality. Annika has FoxG1 Syndrome, a neurodevelopmental disorder that causes developmental delays, can cause seizures, and most people never learn to walk or talk, all due to a deletion on her FoxG1 chromosome.
So now we are adjusting to life with a fox! As of now, Annika does have delays, has been hospitalized a handful of times with seizures, and is on a few different meds to help control them. She suffered from reflux when she was a younger baby, but that cleared up once she was off of formula. She is still a peanut that is not on the growth curves, but she is growing and developing, just on her own timetable.
While she keeps us busy with appointments, therapies, and trips to the hospital, we are excited to see what her future will be like! Annikais a very happy girl and full of smiles and cuddles. Pray that she can defy the odds and learn to walk and talk and show us what she can accomplish!