We have been home over twenty four hours and I wish I could report that Ella has had no more episodes, but sadly I can not. Our night was uneventful and sleep was limited for the elders. Steve and I were up checking on Ella as often as possible. I would say that it’s a miracle we slept at all. I originally planned on sleeping with her but if she knew I was there she would stay awake. I could tell she was exhausted.

We gave Ella her first dose of Keppra before she went to bed last night and she passed out quickly. They told us before we left the hospital that the medicine was going to make her drowsy so we weren’t surprised. For the first time since we were admitted she appeared to be sleeping peacefully. She wasn’t restless and looked very relaxed. There truly is something to be said for being home and in your own bed.

At 6:30 am I went in to give Ella her medicine. She stirred a little and wasn’t happy about taking it but she fell back asleep until 9:30 am. When she woke up her mood wasn’t much different than it normally is. Steve took her down for breakfast and that’s when she had her first episode. It was a short one and she bounced back quickly. After breakfast she happily hung out downstairs with the boys until Dani arrived. After her reunion with Dani, she desperately needed a bath. I made sure I went with them to bathroom in case Ella had an episode while she was in the tub.

It was like I sensed something was going to happen because right after the shampoo was put in her hair, her eyes rolled back and she went down. Dani grabbed her out of the tub with the quickness and held onto her until she came out of it. Dani was so calm and reassuring with Ella. She handled it like a pro. She quickly finished bathing her and brought her in to get dressed.

That is when she had her third and final episode of the day. She was on her back, which is the way she was when I found her the morning we called the ambulance. This episode lasted the longest and really wore her out. Not too long after it was over, once she was dressed and watching tv, she fell asleep with Dani by her side. She snoozed for decent amount of time.

So many people have reached out to me since we have been home with suggestions and questions about Ella’s episodes. I thank you all. I am just as confused as you, and Steve and I wonder why within a half hour after we get home from the hospital she has multi episodes. It just doesn’t make any sense.

We can’t think of anything new at home in the last month that would be a trigger. We thought maybe they were positional, only that doesn’t make sense because she has been in multiple positions when it has happened. There have been no diet changes. The only thing that has been a significant change in the last two months is her lack of weekly therapies at school. But that doesn’t explain why these episodes would only be occurring at home and not at all in the hospital?

Like all medical concerns in Ella’s life, this mystery is still unsolved. Time will tell if the new medicine is the right solution. We continue to be grateful that she is home with us and smiling happily most of the day. Counting our blessings is something that we try and do often. She sure did give us a scare.

Thankfully, the rest of her day was amazing. It makes me hopeful the medicine is starting to work. She was playful and laughing with Dani most of the afternoon, into the evening, and ate a nice big meal for dinner. CJ even willingly took a picture with her tonight. Miracles are definitely happening. Before bed she got her third dose of medicine.

I am currently with her now, listening to her breathe, and occasionally make the cutest self soothing sounds. These noises let me know that she is okay. My sweet girl is as tough as they come. A true force to be reckoned with and determined to make us all work for answers.

Today a special thank you goes out to Bridget and Evelyn for sending us yummy food to fill our bellies during this crazy time. A heartfelt thank you also goes out to those who offered support and checked in with me today. Keep the good vibes coming!

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