Ella is 1! On the one hand it seems like the time just flew by taking maybe five minutes, on the other, with all the dramas, discoveries, consultations, hospitalizations, anxiety, relief, new anxiety and then finally surgery… It seems like we’ve been doing nothing else all of our lives. Ella is 1 chronologically, it isn’t clear where she is developmentally. She lost a lot of time with the seizures, the medication, hospitalizations and surgery. It’s time for her to start catching up. We are noticing progress from time to time, when we realize she is doing something she never did before. Mostly people who see her only periodically notice these changes. They say they can’t believe the changes in her. We are happy to hear that but can’t always see it. One thing is consistent with Ella and that is the lack of consistency in her development. One day we will see her doing something (like swatting with her left hand, trying to grab something), the next day it isn’t repeated. There is no question whatsoever that she is in a better place than she was before surgery. I shutter to think what would have happened if we hadn’t insisted on going ahead with it. The pressure of her right hemisphere might have done permanent damage. It was very close, they say. She’d still be medicated to the max and the risk of seizures just around the corner. We are on our way to totally eliminating her medication. And in general she is much more ‘with it’, connected to what is happening around, recognizing things and reacting to them. She is amazingly good natured and fun to be with. I would have loved for Ella to be born without her restrictions, without the debilitating crippling conditions, to be given a fair chance. But that didn’t happen…
Now that we are here, I can’t wait to see where Ella goes next.
Stay tuned…