4 Months Old: Tiny Dancer

Gianna shared celebrating her 4 month birthday with Angelo, who turned 3, and Dominic, who recently turned 6.  Big brother Dominic accompanied her to her doctor's visit today, and tried his best to comfort her when she got her vaccinations.  She's more than doubled her birth weight now at 12 pounds and 12 oz.  Her pediatrician was really pleased with her growth and development - especially her big "social smile".  His primary concern is with her vision, but we'll have to wait and see what the neuro opthalmologist says in March.  He also gave me some techniques to work on her head placement.  She tends to always lean her head to the right, and without intervention she may have a muscle imbalance in her neck.  All in all, G is doing great.  She's starting to coo, notices her toys more, and seems to get more alert and interactive every day. 

Dominic was a great distraction after getting her shots!

Superhero - Part 2

Waiting on her appointment....  The boys got Gianna this Batgirl shirt for Christmas :-)
She has recently discovered her fingers, and prefers them to her pacifier - just like Angelo!

Gianna had a CT scan to check the size of her ventricles this week. The scan was thankfully really quick and I got to stay with her. She didn't seem to mind it at all, and even smiled at the tech during the whole process! Afterwards we met with the neurosurgeon, who said she looked great. On the ultrasound prior to her shunt surgery, I remember her ventricles looking like a large butterfly, which means they were filled with fluid. Although I didn't see the images from the CT scan today, the doctor said they now look like "slits", so the shunt is doing its job of draining the fluid out of her brain. Part of the point of doing the CT scan is to have a baseline image of her ventricles. So in the future if there is ever a problem with her shunt, we can compare the images to see if it has stopped working. No more tests for a while!

CT Scan machine

I had to hold her head steady during the scan - fortunately she was fascinated with the lights and it was quick!

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

Happy New Year

Gianna rang in the new year last night at Aunt Cara's house rocking her new skinny jeans and boots!  2010 certainly had its ups and downs, but we're looking forward to starting this new year together with whatever it may bring.