Our Waverly Mae

Waverly is unwell. At the moment we are unsure if this is a result of some medication changes due to seizure activity or if this is progression from the disease.

In August, Waverly started having daily seizures. They were simple partial seizures which mainly affected her right side. I had hoped they would simply depart, but after two weeks we knew we had to see our neurologists. They agreed that she was having seizures and would benefit from medication. We started Keppra, a standard tried and true entry medication. At first we saw improvement with zero side effects. However as the weeks passed, Waverly became more irritable and her nightly seizures returned with more voracity.

During this time she also started having a lot of issues sleeping. She would wake at 2am and cry the rest of the night. She was exhausted and exhaustion can be a trigger for seizures. We felt caught in a vicious cycle. She also grew more irritable, with lots of crying and wincing in pain when she was touched.

We met with Palliative Care at CNMC last week. The doctor we met with was fantastic and I instantly felt a rapport with her. She increased a pain medication that Wavey has already been tolerating well. She thought a change to the seizure mediation was a possibility, but wanted neurology to make that decision.

We met with neurology Wednesday. He wasn't definitive that Keppra was causing the decline, but he was willing to change the medication to see if some other type would be more effective. We are now in the midst of tapering off of the Keppra whilst titrating up the new medication. He also prescribed a med to help with sleep, which also has an anti-seizure property.

We are about two months into the seizure journey and it is everything I had feared it would be. Our little girl is groggy, vacant, uncomfortable. She is no longer turning when we call her name. I haven't seen her smile for weeks and laugh for even longer. Elmo no longer brings giggles out and reading "Imogene's Antlers" can't elicit a smirk. She cries a lot.

She is also having difficulty tolerating her feeds during the daytime, so we are attempting to slow down the rate and possibly volume of her food. 

I typically write with a lot of emotion, trying to convey how I am feeling in the midst of all of this. However I am emotionally spent. And I feel this all speaks for itself. 

Please keep our little girl in your thoughts and prayers.