Barb and Kate returned from Seattle mid day on thursday July 4th. They had been at Children’s Hospital for a 24 hour EEG study that includes video.

Kate had been progressing down a path since her first vomiting episode on June 29th, the retching, sleeplessness and agitation increasing in frequency and severity to the point of her spending the entirety of Monday on the sofa crying or yelling at her big sisters.

Once they returned home, Kate was almost four pounds lighter and exhausted. She slept a lot over the next three days and her apatite gradually increased. Her general positive demeanor returned as she gained weight and slept. We are fortunate to have her back to her positive baseline well being, happy, energetic, loving.

We have enjoyed the relative stable two weeks since then with only intermittent retching and three to four anxiety points during the day. When she is not doing well, she feels nauseous and panics and needs her “bucket” feeling sure she is going to throw up. When she has these waves of nausea she stops whatever she is doing, playing, watching a movie, wakes up from sleeping and desperately needs her bucket. Occasionally she has an episode that includes shaking or shivering, and lip smacking, and she will communicate that she feels cold.

She typically retreats to the sofa or into our arms if we are close as the feelings subside. It’s heart breaking when she feels this way. She deserves a better quality of life.

We are taking a renewed approach to Neuro-development appointments at Seattle Children’s with a focus on her base line well being. We are targeting fewer conversations with surgeons and a greater familiarity with a “home base” pediatrician to understand the whole picture.

Kate is a wonderful little person, witty, thoughtful and loving, our goal is to empower the supporting medical community to help her make the most of who she is.