my baby got hsv-1 when she was born

It's been a long history even thought she's only 9 months.
My husband had the flu few weeks before she was born and had a cold sore on the mouth, by the time I delivered there was no more cold sore, but it seems that the virus waited for her 'cause a few days after going home we returned to the hospital just to be told that she had symptoms and that they needed to do more test just to make sure that it wasn't herpes. The test was positive and we stayed in the hospital for three weeks. After that the doctors said she'll be under acyclovir treatment until the age of 6 months. Finally, six months had happened and we were really happy, no more medicine for our little one, but unfortunately a month later she started to have some fever and seemed to have pain, after a visit to the doctor she said that it was an ear infection, and we returned home. The day later she was really floppy and her body was shaking ( at that time I didn't realize she was having seizures) I took her to the emergency room and they said that she was dehydrated only, when they were putting the IV she started to seize again and that's when they started to ask more and they realized the herpes had come back, they started the acyclovir tX again but by then, my daughter could barely move, she was only moving her eyes and her body had no movement at all. Little by litle she started to move again, right now she's much better her right side is still weak, and she's going to physical therapy and speech therapy. She's improved a lot, I thank god everyday for letting her stay with me, and I know that right now she's only 9 months, but there's an even longer journey waiting for us. I'd like to find some people with a similar situation, 'cause I wanna help her but sometimes its hard to know if we are doing the right thing.