Year three of Ezzy’s life was a lesson in making peace. All of her first year we thought “if only we could get her GI system working better.” And then during her second year we thought “if only these seizures would stop” …and “if only we had a diagnosis” and “if only her GI system was working better.” Early in year three we had all of these things. The ONFI was controlling Esmé’s seizures fairly well–she was clustering once every one to three months instead of every week. This felt like a vacation. We had a diagnosis, we had a “community” that we fit into. And in March Ezzy had surgery to fix her original anti-reflux surgery from 2011 (fundoplication)–which had become increasingly problematic, creating a giant hernia from about of a 1/4 of her stomach which had moved into her chest cavity.
But then she was hit by the year of infections…it was a constant barrage of sickness–often unspecified sickness–with constant high white blood cell counts. At the same time, in typical Esmé fashion, despite these infections, she was making gains in mobility and communication–seeming to understand much much more of what we said to her…and her gains inspired a few gains in the lives of the adults around her.
Here is Ezzy in her Tiny Superheroes cape!
Over this year she used a number of mobility devices. First was her Pony Gait Trainer (I wrote a whole post on the Pony that year):
Although we’d been able to manage most of Esmé’s infections at home with the help of her nurses (and that wonderful feeding tube!). In May she wound up in the hospital with a nasty UTI…But, still with the smiles…
In September Esmé met two other little girls with PCDH19 in NYC for a photo shoot with Rick Guidotti from Positive Exposure. Check out the TCS Foundation video that we put together from those photos. It was such a lovely experience.
And exploring new things–since she was better and better able to concentrate:
We helped establish and celebrate the first annual PCDH19 Epilepsy Awareness Day on November 9th, 2013. Ez really enjoyed the purple balloons we used to celebrate!