An Update

I don't want to take the time to summarize the past few days. That I will save for times of reflection and processing.

Wavey is still with us and bringing joy to each and every moment. She had a little rally over the weekend with some brighter eyes and even a tiny smile for me yesterday morning. Yesterday afternoon she began having more neurological symptoms. She was having small seizures and then one large one that was terrifying for all of us. Her little face looked so pained and she cried for the first time in weeks. It was heart wrenching. Her medications didn't seem to break the cycle and it took multiple doses before she finally fell asleep in peace for the night.

Last night our favorite doctor popped in for a visit. She has been out of town and after a long day at NIH drove to our home to see Waverly. It meant so much to us to have her here. She *knows* Wavey. And we trust her implicitly. We talked through what we have seen, what decisions we have to make, what is to come. Over the past few days I have felt overcome with feelings of regret and fear. Nervous we missed something or made a wrong turn. Her reassurance filled me with such a sense of peace.

Day by day.

Moment by moment.

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Thank you to everyone who has brought food, sent flowers & balloons, mailed cards, delivered candy, prayed, thought, texted, emailed, drove Oliver around, visited, shopped. We are grateful for our tribe of support and love.