Still here…

I don’t really know for how long I have been trying to sit down and write a post. At some point I didn’t even try, I just didn’t feel like writing… at all. A lot has happened since the last time I wrote, Isa is now a 3 year old, a little girl that can be very stubborn, a little person who’s favorite word is ‘no’ and who can throw herself on the floor when she doesn’t wanna do something. She knows what she wants and it is not easy to change her mind. A little girl who is quite tall for her age and can be very sweet and loving, she can come to you and start hugging you and kissing you, but if she is in a bad mood, she will start kicking like crazy and will try to hit you and scratch you. Sometimes it feels like she finds funny if you are in pain. If she hits you and you say no, she smiles and continues over and over. It can get kind of frustrating, I don’t mean that she does this every day, just once in a while (today for example). She has become very social, loves to be around new people and get to enjoy more and more Ella’s company.


Around 4 months ago we started lowering her medication for epilepsy after she showed no epilepsy activity on her brain and hasn’t had a seizure in more than 2 years. She has now been off medication for over 2 months and we couldn’t be happier. She seems like a new girl in many ways. She sleeps wonderful, she eats and enjoys food, she pays much more attention to everything, she has started to say more words and imitate more sounds, her hair is growing, etc… It shows just how many side effects a medication can cause. We just really hope the seizures don’t come back and she continues to feel better without the medicine.

She can walk and take quite a few steps by herself when she is wearing her AFO’s, she can take a few shaky steps by herself when she’s barefoot. Everything has been improving, slowly, but improving.


She has just today started a 2 week intensive training with the conductive pedagogy method. We are hoping to see a lot of changes and see Isa develop in many ways during this summer months.

Ella is now 15 months. She is a super strong little girl running and jumping around. She has received quite a lot of punches by Isa and a few scratches and bites, but also a lot of love from her big sister. As Ella grows and gets stronger, she can avoid and protect herself more and more when Isa tries to hit her. The have started to actually have a lot of fun together and Isa wants to have Ella around all the time, they are like mirrors, one does something and the other one does the same. As time passes it seems like Ella understands that her sister can not do many things by herself and she tries to help her. They were just playing on the balcony the other day and Isa got stocked and couldn’t come in to the living room, Ella went back, grabbed her hand and started pulling Isa to come up.

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I feel so happy that we had Ella and now they have each other.


2 thoughts on “Still here…

  1. I love these. Sebastian and his sister share a very special bond too. It’s beautiful to witness! Super exciting news about no seizure meds and the improvements!

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