Supergirl Version 4.0

Somebody had a birthday...

I feel like I say this every year, but I can't believe another year has gone by! Seriously? I blinked and all of a sudden she's four. We are having a party on the weekend with grandparents and a few of her little friends, so of course there will be lots more photos to come. One thing I struggle with every birthday is whether or not to make her a birthday cake. Nevermind that she can't chew solid food, but with her Ketogenic Diet birthday cake is sadly off limits. But it's still a celebration, and I think it's important for Marissa to see Taylor's birthday celebrated in the most 'normal' way. So at noon on her birthday, I finally decided to make a cake. And the most appropriate one I could think of...

Taylor had an EEG today, apparently her 8th one, followed up by an appointment with her Neurologist. I felt great while the EEG was happening, I've never seen the monitor look better. In the past it's been so full of chaos, but take a look at today's thing of beauty...

Dr. Bello looked at the footage with us afterwards, and you know what he said. That it's only 1% abnormal. That's right, ONE percent abnormal. Which means 99% NORMAL!!!!! He said it shows rare, isolated spikes during sleep, but the wake background is normal. Incredible. Supergirl continues to live up to her name. He once again said how her EEG results are remarkable. From a girl who was once having several hundred seizures A DAY, to this, truly is remarkable. We feel so incredibly grateful for Dr. Bello who suggested the IVIG treatments that have brought Taylor's seizures under control. And for living in Calgary where we have the Alberta Children's Hospital, the only hospital in Canada that offers IVIG as a treatment option for seizure disorders. We are so fortunate to be where we are.

So, here you have her, Supergirl Version 4.0!

As of yet, the underlying cause of Taylor's epilepsy, profound global developmental delay and related CP (cerebral palsy), is yet to be discovered. Dr. Bello shared some interesting information with us today though. There is compelling evidence that females with a history of infantile spasms and intellectual disabilities is because of a gene called PCDH19. Because of the increased awareness, there is new gene testing to confirm the presence of this gene mutation. So the paperwork is being done, and Taylor will be tested soon. We've been researching it online tonight, and if Taylor has this gene, then the underlying diagnosis is something called EFMR (epilepsy in females with mental retardation). Like he's told us in the past though, finding a diagnosis isn't going to change anything treatment-wise. For some reason though, and I can't really put into words, I would like to have an actual diagnosis. A reason. An explanation. An answer to the "why does she have this" question that we've always wondered. We may have that answer soon, but maybe not. Time will tell.

Tonight though, I feel blessed and grateful and in awe of my real life superhero.