Four years of Ezzy: Year 2

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The theme of the second year of Esmé’s life was seizures, unfortunately. She was starting to seize every week, almost to the day. We still weren’t certain that these things were, in fact, seizures–but they were. She had tons and tons of hospitalizations. We spent a ton of time in Boston for EEGs and a bunch of diagnostic tests.

This visit to Boston was in March, when Ez was 14 months old–we were able to enjoy the beginnings of spring in Boston Commons the day before an MRI.

We started her on her first anticonvulsants about a month later. While Keppra seemed to stop the seizures, it took all of the spark out of her. She would just stare off–when she wasn’t crying or vomiting. She lost a pound in two weeks.

She finally came close enough to the height limit on her baby seat at 18 months to get her in a convertible car seat…which, of course, had to be red.

We headed back to the hospital for more EEGs in June.

On July 4th we went to see Ezzy’s Papa become an American citizen.

In late July we moved into our new house which is all on one level to accommodate her mobility–and where Ez could play on our big lawn.

In August Ez had back to back emergency hospital admissions for clusters of seizures that would not stop. The first one was on August 8th, my 30th birthday, in our local hospital. The second was August 21st…and it lead to the final proof of Esmé’s seizures on EEG and the genetic test that would finally diagnose her disorder, PCDH19 Epilepsy.

We learned that Esmé really enjoyed very very cold water.

Despite being on the fourth anti-convulsant, she was still seizing regularly. Most days Ez and I spent in bed resting between her seizures. We tried to have fun in between whenever we could…but the fall was really a blur of sleep and seizures and lots and lots of medications. We made a good effort for Halloween…

Halloween

Right before Christmas we were called with the news that Esmé’s genetic tests came back showing a mutation in the gene PCDH19. It was a relief and also a huge blow. It also happened that around that time we got Esmé ONFI levels up high enough to slow her seizures. We had a really lovely quiet Christmas that year–we were beginning to see her wake up from the spell she’d been under for months.