As promised, I shall provide you all with the latest Ella update. I wish it was more positive news, but this one isn’t so great. As a parent you never want to see, or hear, of your children struggling.

Thursday was a tough day! The kind of day that spirals out of control just when you thought you MAY get thirty seconds to sit down and relax. The kind of day that immediately changes any plans that you had.

It was 10:38 am, to be exact, when I felt my phone vibrating and picked it up to see who it was. It was Ella’s school. Immediately my stomach dropped. All week we had been getting notes home regarding episodes she was having. The teacher was recoding video when she could, and everyone was keeping an eye out for possible triggers. I was dreading a call because I knew it meant the episodes were escalating.

I answered and it was the nurse. The first thing she said to me was, “Don’t worry Courtney. Ella is okay!” That doesn’t give me the warm and fuzzies because there is ALWAYS a but. Sure enough, it came not thirty seconds later. She told me that Ella had fifteen documented episodes less than two hours into her school day. Wtf? She suggested I come and get her because of her rough morning. Due to the timing of the call, I asked them to lay her down for a little bit and feed her lunch. I would be there to get her at 1 pm.

I knew she would be tired and I knew she would be hungry. Getting her at that precise moment would have thrown her off her schedule and that is the last thing I wanted to do. School was also a half an hour away. I needed some time to get there. The first thing I did was send her neurologist a message with the latest update. Next, I called the people I needed to call to make sure I got access to the videos that were recorded. After that game of phone tag ended, Steve, Jack, and I headed to get her.

Due to COVID protocols, they have you wait for your child at the end of a long walkway and someone brings them out. The INSTANT Ella saw my face from afar, she smiled. By the time her stroller reached me she was full on laughing. She certainly did not look like a child that just had fifteen seizures. Her teacher was the one who wheeled her out and we finally got to meet. So far she has been amazing and right on top of things with Ella. We caught up for a few minutes, but I was anxious to get in the car and watch the videos.

There were ten recorded occasions over a span of two or three days. Her teacher did inform me that some videos were taken after her episodes had ended because most are super quick and it’s hard to record. Noted. Steve and I watched all ten videos. Of the ten, three we could definitely say were something. The other seven appeared to be normal Ella behavior. Even after reviewing them again with Dani, we agreed. That’s every day Ella!

I am in no way saying she didn’t have an episode all tens times. I am saying, ten were not recorded. We all agreed that what we are calling an episode at school looks the same as what we are calling an episode at home. All of this begs the question though, why is she having so many more at school? To that question, I have no answer.

The rest of the day after we picked her up was great! She took a nap, and Dani was here to give her all the extra love and cuddles she could ever want. They hung out, went for a walk, she gave Ella a bath, they ate dinner, and then hung out some more before Dani left. No more episodes. No breakdowns. She even went to bed early. My guess is because the day wore her out.

Friday she did much better at school. They reported she was still tired but definitely less episodes. We also finally got word that they approved the at home hook up of the EEG. Now I wait for a phone call to schedule. We also had an hour long zoom call with a doctor at Boston Children’s Hospital. She was absolutely amazing. I promise to share more about that later.

This week kicked my ass! Between worrying about Ella at school, the thirty phone calls that were made to various people, and the countless emails going back and forth, my head has been spinning since Tuesday. Sleep has been almost non existent. Juggling Ella’s needs and the boys is tough.

I pray I get some sleep this weekend and that next week is a better one for Ella! Thank you for always keeping us in your thoughts.

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