So, while Anna has been doing good on the medicine for her seizures, I have noticed something in Ayva.
I think she is having them too.
Although, hers don't seem to be as bad as Anna's were, but she is definatly "jerking" her head and arms and that IS the way it looks for that type of seizure. I am so devestated. Not only one precious baby with seizures, now two??? How could this happen???? We don't know for sure if Ayva is having seizures or even if it is what Anna has. But I know in my heart it is the same as what Anna has. Infantile Spasms. I am just so sad that my poor babies have to go through this. I thought that their struggle at the beginnings of thier lives was enough. They had had all the struggling days behind them. I guess I was just hoping that was the end of it. Now they have to struggle to keep up. To try to grow and learn despite of seizures that plagued them- who knows- all day? All night? They could have been having seizures all day and I would not have even known it. The Neurologist said with I.S. it is like thier brain is mad. The seizures are irritating the brain and it makes it hard to concentrate and learn. The seizures need to be controlled or it is MUCH harder to learn. I am still in shock at the severity of this all..... in denial mabye. I just keep telling myself that what I read and what I hear don't have to mean that is what is going to happen. Not to my babies. My babies will be perfect. They will grow out of it and be just perfect. No lasting effects. I just keep telling myself to stay positive. They will be fine. Those sentences repeat like a broken record in my mind. Over and over. I feel like I am in a daze and all I can say or do is repeat those sentences. They will be just perfect...
I think that not knowing the future or how things will work out in the end gets to me. It's like watching a movie and asking someone how it ends before they have even gotten close to the ending. I NEED TO KNOW. I have this need to know. Even when I know no one else knows the answer, I still ask out of desperiation of getting to the answer. I feel this way about a lot of things. I just wish I knew the answer to how to help my babies. How they will learn and develop. I know that if I did know exactly how they were going to be when they are older, it wouldn't matter much. I would still love them the same. Still treat them the same. I just feel helpless. And I feel that as their mother I should be more help to them.
I know deep down that I DO give them enough love and support and help learning and growing, but I can't help feeling like it is never enough.
I love all three of you, my little pumpkins!