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Life

EMU Stay

Last week, Lydia had her long awaited EMU stay (EMU stands for “Epilepsy Monitoring Unit”). I had been dreading this visit ever since I found out about it. I just felt uneasy about it. Here is how it went… ENT Before we were admitted to the hospital, Lydia had an appointment with a new doctor …

Life

Life with Rett

October is Rett Syndrome Awareness month and it seems like a good time to give an update on all things with Lydie’s health from the past year. This last year has seen mountains and valleys. I remember speaking with a friend in April about how things were going really good with Lydie at the time. …

Life

Penelope Syndrome

Tuesday morning began almost like any other day. I got up at 6 and usually if Lydia isn’t up already, she is very soon after me. But she didn’t get up. This always makes me worried. The more time that went by the more worried I became. Finally around 7:30, Mark went in and Lydia …

Life

Swallow Study

A couple weeks ago, Lydia had a swallow study done. This is something that has been talked about since our very first appointment we had for Lydia when we became concerned about her development. Lydia’s reflux is just relentless. She is on medication and we do a lot at home to try and help her …