Superhero

Our Supergirl



After a nice break during the holidays, Gianna's appointments resumed today with a visit to the Neurologist.  Her doctor confirmed that the EEG didn't show any seizure activity, but reiterated that Gianna would always be at an increased risk for seizures.  Although her agenesis of the corpus callosum may prevent the seizures from migrating to both sides of her brain, her brain irregularities put her at a significantly increased risk of having seizures at some point.  So this was a little different than what I was told before (that kids with ACC typically do not have seizures).  As with many things with Gianna, I guess we'll just have to wait and see and hope for the best.  She described to me some of the signs to look for (such as staring off into space), but explained that it can be hard to identify seizures in infants since many of their movements are so "jerkey" anyway.    She set up an appointment for her to see a neuro opthalmologist. I'm looking forward to that since although we know Gianna can see to some extent, her vision and eye movement are definitely concerns.  It's gotten a lot better since her shunt surgery, but her eyes still cross and go in different directions at times.  Although encephaloceles are unusual, they are apparently not nearly as rare as the Chiari Malformation type III that Gianna has.  Her Neurologist has never worked with another child with this particular diagnosis, and said that the medical literature skims over it, basically only saying that it is extremely rare.  This is the only information I've been able to find also, so there's really no roadmap for what to expect.  The doctor said that we will be able to determine a lot more about her functioning by her first birthday, when children are typically using more of their cortex.  So for now....we're trying not to worry too much, and are just enjoying watching our little Supergirl grow and develop!

Waiting to see the doctor