When Lydie started having seizures again at Christmas, we had to reevaluate things with her neurologist, Dr. B (our absolute favorite doctor). We felt very blessed that we were able to adjust her current seizure med and add an additional seizure med (without side effects) and Lydie’s seizure’s seemed under control again. We met with …
Two weeks ago, Lydia had an appointment at the Rett Clinic. We were so grateful we were able to get in when we did. It has been eighteen months since her last one and a lot has changed for her since then. This is a marathon of an appointment but it went so well! Making …
Oh goodness. I’ve been putting off writing this post. It has been a tough week almost two weeks. Back Story Remember when we had our disaster hospital stay back in November? That visit (mostly just that sleep study night) was horrible for Lydia. And it did a number on me. I came home feeling defeated. …
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 …
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. …
Last week we had a sort of unexpected night. Lydia has been on a wait list for a sleep study for several months now and we got a call around lunch time asking if we could take the spot for that night and we did! Of course, it was a night Mark was working, but …
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 …
It has been a L O N G time since I have given a Lydia update with regards to her health. I was thinking how its only been a year and a half since her diagnosis, but it honestly, might as well have been YEARS. I truly can’t remember life before everything changed. It just …
We had an amazing opportunity a couple weeks ago to meet several other girls and their families that have Rett Syndrome. When I was first invited to this, I was really unsure about whether or not I wanted to go. I know that might sound strange but hear me out. Before this, we had never …
This last month Lydia got her first wheelchair! And she LOVES it! Several people had warned me that this was going to be a really emotional experience, but it really wasn’t – or at least, it was only in a really positive way! Once we got her all in, I was so happy for her! …