backing up...

Now that we have the acuity of Georgia’s surgery behind us and she is well into her recovery, we wanted to share more of what the past 6 months have been like for Georgia and us. Many of you have asked if we are REALLY doing as well as we sound in our posts. We honestly aren't blowing sunshine up your rears, promise! We truly are thrilled with how Georgia is doing and she continues to amaze us every day. The hard, gut-wrenching part was leading up to and actually making the decision to go through with the seizure surgery. To be blunt, the past 6 months sucked, and the day of her surgery was the hardest day of our lives. We don’t intend to be dramatic here, but thought we would share some insight into this recent past.

Just to recount a bit of history for those who may not know Georgia's story so well. Georgia was diagnosed with a brain tumor at 11 weeks of age and underwent her first surgery at Boston Children's Hospital, almost 3 years ago to the day. It was completely removed and thankfully benign. At the time, her left sided weakness (hemiparesis) and left sided vision loss were worrisome, but nothing compared to the possibility that it could have been cancer or worse, it could have taken her life. And when her doctors at the time said her biggest risk would be to develop seizures, we didn't worry...it wasn't cancer and she was alive!

The seizures started 2 years ago when she was 16 months old. They weren't the scary convulsive type; instead they were something called complex partial seizures which consisted of her staring off, having slight tremors and stiffness and seeming "out of it." A single medication kept these seizures under control - growth spurts and illnesses caused break-throughs but easy dose changes in the medication (keppra) nipped them in the bud. Then in January, she started having clusters of seizures lasting 5-10 minutes, occurring 5-7 times per day. These seizures made her arms and legs flail out, her head bob down, her eyes beat over to the side, her trunk flex and would often caused her to fall down. We tried to change her medication for the 1st time which was a painful 6 week titration process, all the while she was having just as many seizures day after day. It was truly heartbreaking to watch her have these. After 6 weeks, her seizures were really not better so she was admitted for a 24hr EEG (which looks at brain activity). This EEG showed that Georgia's seizures had changed and were now classified as infantile/epileptic spasms and we would need to try alternative medications. These type of seizures were harder to control and had much worse prognosis if not controlled. This was probably the hardest news to hear, oh, and this happened a mere 2 weeks after Lillian was born. Needless to say, it was an emotional March.

We tried 2 other medications from March – June that were better aimed at the spasms all the while pursuing the possibility of seizure surgery in the event that these medications would not work. The thought of a second brain surgery for a 3 year old was horrifying...but we also understood that it kind of made sense since she had a large amount of scar tissue from the brain tumor which was likely the source of the seizures. It would also be much more harmful for her development to continue seizing which made a mechanical fix seem to be a reasonable alternative. As if we needed more proof, Georgia was becoming less herself – the dozens of songs that she used to belt out so easily were much more difficult for her to remember and more often, she seemed to stare off and become less responsive to people around her.

The subsequent surgical work-up in May-June showed that Georgia did have a somewhat focal source for her seizures, limited to what they thought was the posterior quadrant of the right side of her brain (right hemisphere) encompassing most of the temporal lobe and parts of the parietal and occipital lobes. The frontal lobe, which is the largest, looked OK on the scans and EEGs. These results, plus the facts that she failed 4+ medications and had plateaued in her development made her an appropriate surgical candidate. Part of us was crushed, part of us hopeful that perhaps we had a “cure” with surgery. We did our due diligence, sought second opinions from Boston Children’s and Cleveland Clinic, talked to other families, attacked the medical research and ultimately realized that surgery was Georgia's best shot at stopping the seizures and getting her back on track to do normal 3 year old stuff. Scary as another brain surgery was, we had also been told that her young age was a huge advantage…if we had a quarter for how often we heard how "plastic" little kiddos brains are, we'd be rich. Needless to say, we’d rather not gain our riches this way.

To be continued…



Here is Georgia in the surgical waiting area on the day of her surgery. What a trooper...she hadn't eaten or drank since dinner the night before and she was still smiling.