I have not done a strictly Ella post in awhile so I wanted to let everyone know how she was doing, and what’s been going on. In four days it will be one month since she was rushed to the hospital. It feels like an eternity has gone by since then.

The Keppra she is on has definitely changed Ella in many ways. For one, she is having little to no episodes. That being said, we do think she might have had one today. She was super tired and hungry, and seemed very out of it before lunch. I don’t know if those are triggers, but once she ate she seemed to be less lethargic and more settled.

Her disposition has changed as well. In the beginning she was a beast, there is no other way to put it. She yelled a lot more than usual and even the things we had known to calm her in the past were not helping. After reaching out to the neurologist we did put her on B6, for what she said would help with her “behaviors”. In a few days time her moods had significantly decreased.

We have also noticed that she seems to be more expressive lately. When she sees people, who take the time to interact with her, she immediately smiles and turns on the charm. Today the entire family locked ourselves in Jack’s room for a play date (rooms are way easier for containment). CJ, Jack, and daddy were play fighting and Ella belly laughed the entire time. She is enjoying more of life’s moments and loves being surrounded by everyone. She is even moving her mouth more and giving kisses. It’s almost as though she is attempting to talk.

Most of her rare moments of incredible frustration come when she is home, or extremely fatigued. I can be home with her all day, and while she is happy, you can tell she is on edge. The second I take her out to be social, her mood perks up and her laughter is plentiful. She truly thrives off of seeing people and just being a part of what is going on. The second she is done though, she is done. It’s hard for her to come back from that.

After talking to another mama, whose son is medically very similar to Ella, I decided to try a weighted blanket with her. My hope is that during the tough times, when she is really struggling, it will calm her down. So far I have seen a minimal difference, mostly during her tired times. She definitely knows there is something strange about the blanket and is feeling it out. She is notorious for moving around a lot when she is in bed. It has for sure helped with that.

As per this mamas feedback, I also got Ella a compression sheet. In theory it sounds like a great idea to help manage all the sensory stuff she has going on, but I can see this going one of two ways. It’s either going to settle her, allowing her to sleep longer and more soundly, or she is going to be super pissed off. It came today. It looks a little challenging to put on so that will be a project for tomorrow.

In sort of Ella related news, I have also recently come to terms with the fact that my Toyota Highlander is too small for the three kiddos. When we bought it, Jack was not even a thought in our heads. We had two kids, and that seemed perfect, which made the middle row captains chairs so appealing. Now with CJ sitting in the back, there is minimal room for much else. If I have to bring the double stroller I can barely fit it next to CJ in the back, let alone anything else. What kind of car to get is the new great debate at the Zurlnick house. Any suggestions are surely welcome, with feedback. I am really struggling here. Helpppppppp! I don’t really want a minivan, although I know it is a very practical! Hoping there is another, non bus size, option! 😬

We are still waiting patiently for scheduling to open back up so we can get those Boston dates and start planning the trip. In the meantime, we will keep moving along the way we have been, adjusting what needs to be adjusted accordingly, and remaining positive.

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