Now I remember why we don't live here anymore. It took us longer to get from LAX to UCLA (13.9 miles) than it did to fly from Seattle to LA. And it was the middle of a weekday! Brutal! We were late getting to the hospital, but like most things LA, they were later. We waited in the admissions area for 2 more hours before we even got up to our room (they were late with a discharge, and slow with housekeeping).
But we're here. They started the EEG immediately (I was impressed at how quickly and efficiently they got her all hooked up, without bundling her), and told me the next morning that she is NOT having seizures (despite her many odd movements and Dr. Chugani's diagnosis). We're relieved, and we believe them; we never thought they were seizures, and 2 other neuros didn't either. So we're stopping the Topamax, and I couldn't be happier. She might be a bit crabby for a few days without it, but I'd rather that than have her needlessly over-medicated.
Tuesday she had another PET scan. They had a hard time getting a usable scan, because of the anesthesia they chose (Propofol). Too much and she quit breathing, not enough and she wouldn't hold still. They couldn't find the magic in-between, but today the docs reviewed it and said it was good enough and we don't have to repeat it.
I met with the geneticist today. He's a guru in his field, highly recommended, and a wonderful man. He spent a lot of time with us, and said that we didn't need him, we'd already seen some of the best. In fact, the doc we saw at UW in June was his teacher, and the one at OHSU is outstanding in the next generation of geneticists. He offered his opinion, which, not surprisingly, was nearly identical to the one from UW. Then we talked much more philosophically for quite awhile, and I appreciated his candor, intelligence, honesty, respect, and insight.
Friday she'll have an MRI & a MR-Spectroscopy, so we have to hang around for that instead of coming home tomorrow night. The neuro team said that review of the PET showed some asymmetry in her left lobe, and hopefully the MRI & MRS will shed some more light on that. Until now we have been told that her brain was structurally complete & symmetrical, just too small (in the same way that some people have smaller feet than others, but they're still normal feet). All of these images will be overlayed to help show subtleties that otherwise might be missed. It will be interesting to see how all these images fit together, and how all these brainiacs are able to interpret them.
But, with that said, I think this will be the last stop on the road to diagnosis for Jordan. We are ready now to accept that we will likely never know what "happened." We're going to do our best to find Jordan a "normal" spot in our family, and release ourselves of the quest to find a cure or a diagnosis for her. Of course this is easier said than done, and logistics are still a huge problem, but we will try.
Devon and I have known for a long time that we will probably never know the cause of Jordan's condition. We've also known that there is no expectation for her to get any "better" or develop any more. We've "known" this for awhile, just as we knew when she was born that there was something wrong. But we needed to see all the doctors, go through all the testing, and live through the process, painful as it is. We needed to know that we did our best, and we need to be comfortable with the decisions we make as we go forward. And for all of that we needed data, opinions, and interpretations. We needed to come to terms with all of this. We needed time to digest things, and experts to share their thoughts and experiences. And now we're done, at least for now, at least until something new and different and logical presents itself.
Frankly, it's going to be very hard to go forward as a family while having a permanent newborn among us. It's screwing up all of our plans, hopes, dreams, expectations, and our lives. But hey, that's life. Shit happens (that's what the geneticist said today, so I'm quoting a medical authority). We'll cry, we'll be exhausted, we'll be stressed out about jobs , and money, and quantity time with each other and the girls, and quality time with each other & the girls. We'll let go of our old dreams & expectations, and learn new ways to forge through our unexpected life. We'll do the best we can, and hope that it's enough. We'll deal with it.
I, for one, have just one small hope: That she keeps on smiling that ridiculous, gorgeous, goofy, heartwarming smile. Forget rolling, and sitting, and walking, and talking, and learning. I just want her to smile while she's here on this earth with us, and I'll imagine it's because she knows how loved and cherished she is, and that she's happy being a part of our family. Corney & cliche as it sounds, it really does make it all worth it when I see that grinning face and those useless front two "beaver teeth" shining through.
The usual please: The carousel, an ice cream cone, and a ride on the Bob-a-Builder toy (that's what Avery calls him, anyway).
Rowe Rowe Rowe your boat. . .
Hey dad, you're outta tune. Let me turn those knobs, please please please.
