The Journey We Are On.....

On the morning of Wednesday, January 13th around 8a.m., we checked in at our local children's hospital for a previously scheduled 24 hr EEG. Since Jeff needed to be at work we arranged for Jeff's dad to come up the night before and stay with Ethan and I at the hospital for part of the day on Wednesday, and for my mom to come up and spend the rest of the day with us at the hospital, until Jeff could join us after he got off of work. Since this was a previously scheduled EEG, I expected that things should go pretty smoothly, as far as being admitted to the pediatrics floor and getting the procedure started. Ethan has had EEGs in the past and it has never been pretty. He hates to be held down and having 26 electrodes attached to his head is not something he finds enjoyable (at all)! In the past the EEGs have lasted about an hour, and this time it was supposed to last 24 hrs!!!! We knew that this wasn't going to be pleasant. We knew that it was going to be rough.  Unfor...

It wasn't a great day for Ethan. Although he did okay at church, he had several seizures during his nap after we got home from church. For the last several days the seizures seem to be contained to nap time, and we have no idea why and this evening, Ethan was just not his usual self. It took him much longer than usual to fall asleep -- more than an hour later than what is pretty typical for him. We aren't really sure what is going on, but he did just have another medication change on Friday (the dose of Onfi continues to slowly decrease, as the dose of Phenobarbital continues to slowly increase) so that might be why he is acting different.  I am scared. I hate PBD-ZSD so much. I hate the seizures, I hate the physical and cognitive disabilities and the health issues that come with it. I hate that we don't yet have effective life-saving treatment options (or a cure). I hate that so many of my friends can no longer hug their children and kiss them goodnight, and I hate th...

As 2015 came to a close last night I couldn't help but think about all that has happened and how much has changed in the last twelve months. Ethan got his own car, thanks to the Metamora H.S. robotics team! Ethan had PT in the pool for the first time! We celebrated Rare Disease Day 2015! I spent the night away from Ethan for the first time EVER. I actually did this on two separate occasions. Jeff and Ethan did better the second time around then they did the first, but I'm so glad that I was able to go on the short trips, even if it took me away from them. The first was to OK where I was able to visit with two fellow PBD-ZSD families. For the second I road the train from Bloomington to Chicago for the first time and attended a NORD conference in Downtown Chicago.  Several dear close friends were forced to say goodbye to children who died because we still don't have life-saving treatment options for PBD-ZSD and thousands of other rare diseases. ...