One year later...knock wood...but it appears the monster has been slain.
So hard to believe its been a year. On one hand it feels like a million years ago and on the other, it feels like yesterday. Our lives were such hell for those 3 weeks we were in the hospital, and even after that when we came home and were so so worried about our weak, tired, feverish little girl. I think Michael and I are both still shell shocked by the experience. But what a payoff we received. A year without seizures.
Julia had her first normal EEG last month--well, as normal as its ever going to be. The area of her brain that's missing will always have an abnormal reading, that just goes with the territory. But the intermittent spiking we saw back in March when she was asleep is gone. Gone. I'm still a bit in shock, which probably explains why I haven't blogged about it until now. I thought for sure the day we had a normal EEG I'd be shouting it from the rooftops. We went in for the EEG because we thought we were seeing complex partial seizures. She would sort of look off in the distance, act funny, and we had just finished weaning her off Vigabatrin so of course we were on high alert. We both fell into such a funk worrying...I have not been that depressed in ages. I cried daily, I hated everyone whose child had never had a health issue to break their hearts like ours had been broken...it was pretty ugly. And then to get the news that no, the weirdness wasn't seizure related...and not only that but there is no spiking in her brain at all...wow. Fantastic news to be sure but could we really be this lucky? Its still hard to fathom.
I now see that even a normal EEG doesn't immediately erase the damage that had been done. We are still dealing with language issues, and probably will be for a long time. I wish I had a crystal ball so I could see into the future and know what her language ability will be 5, 10, 15 years down the road. Her comprehension is progressing well...she understands so much and gets frustrated when she can't communicate well. If she does something wrong lately, she'll say "I'm really sorry I..." and it stops there...she can't put into words what she's sorry about. I always fill it in for her and she smiles like yeah, you got it. But I long for the day when she can finish the rest of the sentence herself.
It's hard to love someone so much and watch them struggle to catch up. But I'm so incredibly, immensely proud of her at the same time. She is such a sweetheart, such a little mommy to her baby brother, so funny and smart (and let's not forget beautiful)...it's hard to let the melancholy consume you for too long when to her the world is a happy, exciting place most of the time. I am so grateful that surgery was even an option for her, and that so far (again with knocking on wood...don't know if I'll ever be able to stop) it has been a success. We are truly very lucky!