Transcript

Three or is like so cheerful she she loves to give hugs even if she doesn't know anyone. She'll say hug, hug and she wants to, you know, pass on her hugs. She has contagious smile. Her teacher is always tell us, you know, even if she doesn't want to work, and she'll give a smile and then she'll make us laugh. So she really loves and enjoys books. She loves to look at pictures and she's able to read, you know, basic sight words too. So she can read and find, find those words in her books too. She enjoys sitting on our swing and swinging high and, you know, just looking at the sky. She makes me blow bubbles when she's on the swing. She loves watching them. She'll instruct me blow bubbles up high in the sky or, you know, blow bubbles on my face and pop them or sit on the slide and then blow bubbles. So yeah, we, we spend like we can spend at least an hour just doing swinging and playing with bubbles. Basically me and my husband, we help you on our throughout her day for all the basic things in her daily life like whether it is getting down from the bed, using the restroom, you know, feeding herself or. Getting some. Fluids and preparing her meds, giving her meds. Giving her a shower or a bath, whatever she needs, brushing her hair and then obviously putting on her shoes or you know, putting on her clothes. That's something that we help her with. She's not yet, she has not yet learned though. She is learning things, you know, on a day by day basis, like she has learned to take off her shirt. So slowly we'll get there. But as of now, me and my husband, we are like helping her with each and everything of her daily life. What is water? I would say since she has with us for past eight years, we have never been for a date night. We are not yet comfortable because her seizure types are so different. We cannot leave her for more than half an hour. So yeah, we never get to go on a date night, and I guess that's OK until we find someone who can really understand her and identify her seizure types. Our biggest fear is SUDEP, that's sudden unexpected death. In epilepsy, we have learned several cases of little kids, they go to bed and the next day their parents don't find them alive. So since yonas epilepsies so complex, that's one of our biggest fear. Almost done. All done. OK, let's be all done. Mama. Be quick, Mummy. I am. OK, looks like we are all done with the iPad or what? Triana will never be able to like marry someone based on how she's right now. She will not be able to have a married life, that's for sure. As far as I can foresee right now, I don't think she'll be able to lead an independent life. She will always need an aid with her to assist for you know, if it's a grocery outing or something like that. And we have not planned on how her life. Looks like after we are gone so. We never thought that we will be able to get kisses from her when she was little. And then slowly over the course of years, we have seen her evolving. When she was little, you know, she would. When it was bedtime, she would, I would be sitting on the floor and maybe, you know, she would. Run around me like slowly take circles around me just telling and then come to me and lie on my lap telling me that it's bedtime. That was her way of, you know, showing love and cuddle. And then slowly and slowly she progress. And you know, with her with so many treatments that we have been doing for her, she now gives us kisses. And last year we went for her music therapy. And then when she was done with her therapy and she came out with a therapist and. As soon as she saw me, she said I love you Mama. And that was the first time I saw those. I heard those words in continuation along with Mama. I was like. I was crying and I was doing I told her therapist that this is the first time she said I love you Mama. And it's a it's a huge, huge deal for us. So since then, like I love you have not stopped.