two steps forward, one step back

well it seems it's becoming more and more difficult to update regularly. our schedule continues to be insane. and when we aren't bouncing around to various doctors or therapies, we are just trying to squeeze in work hours while the nurse is here. and then once she's gone, it's typically pretty difficult to have free hands to type until about 10 pm. . .at which time i'm all too eager to do nothing at all (other than a bit of reality tv).

but emmy is currently fast asleep on dad's lap after a busy day. this morning she had an appt with neurologist specializing in movement disorders at children's hospital. emmy's brain injury is in the section of the brain that affects movement. she already shows significant delay in her movement abilities. in particular, she has a very weak trunk and neck for her age. her arms and legs tend to be very tense when she is upset. and she tends to get stuck in a twist to either the right or left side. however, we are seeing some progress. her arms and legs are moving more and aren't so stiff as much as they used to be. even the neurologist said he was happy to see her hands so open and moving. so that was good to hear.

on a not so positive note, we got confirmation of what we had feared. emmy is having seizures that are finally showing up on the EEG. the neuro is starting her on medication this week in the hopes of stopping them. unfortunately, these are showing up as a really disturbing and difficult to treat form of seizures called "infantile spasms". whatever you do, don't google that term. it's scary and even more so on google. we're trying not to get lost in the fear of it, but just do as we've been doing, live in the moment and do the best we can for her. ironically (or not) as soon as they were diagnosed, they seem to have disappeared. but these type of seizures are notorious for changing and evolving as the child grows. so we pray for a miracle and hope for the best.

today we also had an encouraging OT session. emmy was awake and alert and for the most part content during her whole session. let's just say that is leaps and bounds from where she was when we started OT and she would either shut down and fall asleep or scream bloody murder.

ahhh. . .lots more to report, but i've run out of time for now. so i'll just leave you with a new photo that was taken on sunday funday.