I seriously woke up this morning and knew the date, but had no clue what day of the week it was. I can’t be sure if that’s a good or bad thing. Has my mind completely lost all concept of time or has every day turned into a only a number?

I wish I could report Ella had a good day, but truthfully the entire day wasn’t good, just parts of it. Steve let me sleep in, thank you hunny, so I missed seeing Ella when she woke up. I did hear her on the monitor around 7:30 am screaming though. She definitely wasn’t happy.

By the time I got downstairs she looked exhausted. She was extra drooly today and just seemed out of it. We did increase her dose of medicine last night, so I wonder if that had something to do with it? Despite her look of fatigue, I was able to get her to smile and laugh. As I have mentioned before, she uses her hands to communicate, and when I went to sit next to her she gently rubbed my face. ❤️

Steve took Ella to Dr. Joe and reported that their reunion was as sweet as expected. When they got home I was informed that while she was their she had two episodes. They were longer than yesterday but shorter than they were before she was admitted to the hospital. She was adjusted and seemed to perk up after, but when she got home you could tell she was over today.

Dani was here when she arrived, and sat with her for awhile in her room so she could rest. Ella adores Dani so much that the thought of spending one second sleeping while she is here, is unheard of. She fought hard. There was laughing. There was screaming. There was whining and there was loving. An hour and a half later she was still awake, and as tired as ever.

We were invited swimming at a friends house today, and I had been debating on whether Ella’s mood was going to hold steady if we brought her. I rolled the dice, thinking that fresh air and new faces could be just what she needed to turn her frown upside down. As Dani was getting her ready to leave, she had two more episodes. Ugh.

These episodes wear her out, but napping is not really her thing, so distracting her seems to keep her mind off the fatigue. She had a great car ride over and honestly until the very end of our visit, was pretty good. There was a lot going on so she had plenty to hold her attention.

Dani and I returned home with the littles. They were tired and it was time for bed. Plus, I thought it would be nice to give CJ some extra time to hang out on his own with his friend. He doesn’t get that often. Usually Jack and Ella are tag alongs. As an added bonus, it also gave Steve some time to catch up with an old friend.

Despite Ella’s limited communication skills, she sends messages to us in her own ways. Tonight we received one loud and clear. As I went to give her the liquid Keppra, she opened her mouth and let me squirt it in like a champ, as she normally does. Only this time, not one second later, we locked eyes, her mouth opened, and out came the medicine. Message received Ella. You are over it.

I tried to get a little more in her but I am not sure how effective that was. She has done this before, prompting me to always make sure her head is tipped back so gravity can take over. Tomorrow I begin my quest to find creative ways to make sure she is getting all of her medicine. I was told, lack of proper dosage could bring on breakthrough seizures. Any and all suggestions are welcome.

We were expecting some setbacks when Ella started the meds, and are grateful that they have been minor ones so far. My heart can’t take another trip to the hospital via ambulance. I was just starting to feel good about checking on Ella twenty times a night, instead of thirty!

We were reminded again today just how lucky we are to have such good friends. They keep your mind distracted from thinking about your struggles, if only for a few hours.

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