Who knows something about Periventricular Leukomalacia?

If her life has not been difficult enough being born eight weeks early, then just being born to the parents that she was, then put into foster care for three months,  then returned to her parents who juggled her back and forth taking turns with her every other week, and then finally being moved again but thankfully back to us. During all of this Alexa has been plagued with infantile spasms or seizures as they are commonly known. Although her doctor nicely says, "You are responsible for saving this baby," will I ultimately be able to save her? We have had a CT scan, two EEGs with another one on the way, horrific screaming blood tests where usable veins are like finding a needle in a haystack,  a multitude of doctor visits, an upcoming swallow study, weekly therapies, and an MRI. All of the appts. have been at least an hour away with many, many of those appts. including an entire hour of screaming up and back in the car. Thanks to my mom and her sweet singing (I didn't know my mom could sing) Alexa is sometimes comforted.  As we try to minimize the seizures  with a medication that causes vision loss we continue to grasp at straws as the EEGs show no improvement after all this time of taking the medicine. So now the results tell us she has Periventricular Leukomalacia or PVL. This essentially means brain damage which as of yet they have not told me how significant. It doesn't take a rocket scientist to know that an 8-month-old who can barely hold her head up, won't make eye contact, and sleeps a ton due to exhaustion from seizures, has troubles ahead. So now we wait for her EEG tomorrow and her doctor's appt next week to have some sense of the severity of this. When will this baby's troubles end?