not out of the woods yet

Hi folks,

Sorry we've been off the grid for awhile. Normally no news is good news and as you all know, Georgia has been making incredible progress since her surgery in July; however, things have taken a bit of a turn lately and so we wanted to keep you in the loop w/the latest developments.

Clearly Georgia has benefited from having the hemi. Without her frequent seizures, her cognitive development has taken off, her social interactions are greater and overall, she's just a much happier, calmer little kid. That said, we also knew her surgery wasn't without risks and it now looks like we may be experiencing some of that.

Over the past week, G just hasn't been herself. She's been rambling in her speech, shifting her gaze to the side or ceiling, less attentive during play and having difficulties sleeping thru the night. Her teachers, sitter and therapists all seemed to notice a change in her behavior as well but noted that it wasn't much different from a typical 3yr old. When you figure that Georgia just had major brain surgery 3mo ago, is going to pre-school several mornings a week and undergoing extensive rehab therapies in the afternoons, it's not surprising that she's been a bit out of sorts from all that activity.

Fortunately though, Georgia's blessed w/an amazing mom who is incredibly vigilant, intuitive and clinically perceptive. As she's done since G was a baby, Alicia has been right out in front of all this and has pushed to get Georgia some new tests to see if the seizures were re-emerging or if there was fluid build up in the brain that may be causing Georgia's disorientation. To cut to the chase, there are no new seizures (wonderful news!) but there is fluid build-up that creates pressure in the brain and is likely causing the regression we're seeing in Georgia's behavior.

The good news in all this is that the fluid build up, clinically referred to as hydrocephalus, is very treatable. Basically a small drain in the form of a small plastic tube, called a shunt, can be inserted into the ventricular space of her brain and divert the extra cerebrospinal fluid (CSF) down to her stomach. It's actually a fairly common procedure and Georgia should recover quickly from it but it is still brain surgery.

Interestingly, of all the specialists that Georgia saw this week (incl rehab, neurology, neurosurgery, neuro-oncology, neuro-psych, endocrinology & opthamology) it was her opthamologist, Dr. King, who seemed to be most in synch w/Alicia's concern about hydrocephalus. His examination detected color changes in Georgia's optic disc that were likely due to swelling from the fluid build up. With his sense of urgency, he pushed for the MRI yesterday that got us the results we needed to have the surgical team recommend the shunt placement. Without his help, it could have been another month or so before we got this information - so big shout out of thanks to Dr. K!

We're currently working out the details of when the shunt placement will take place but clearly the sooner, the better. We have tentative plans to admit Georgia Monday morning, the key issue is that her lead surgeon who performed the original hemispherectomy is not available until the following week. There are some other very skilled surgeons that could do the procedure, which is a fairly simple one for these folks, it's just getting to a comfort level working w/someone new. In any event, we'll do whatever it takes to give Georgia relief and I'm confident that once again she's going to overcome this latest challenge.

We'll be sure to step up the blogging and I promise to let Alicia write them, so you don't have to read my long notes. ;-) I'll just stick to the videos and pictures, of which you'll find a few below.

Thanks again to all of you for your continued prayers and support - it truly means the world to us and to Georgia.

Another day, another EEG

Scoping things out at clinic

G & Lillian go 4 wheeling

Best buds