Flying South For The . . . Doctors

Well, it's been another miracle of coordination, but we've finally managed to get Jordan in the door at UCLA. In case you've never called the UCLA Pediatric Neurology Department, it takes an act of god to talk to a person there (or, as in our case, an intervention from another neurologist we know at UCLA, thank goodness).

Since we have appointments at the Children's Hospital of Michigan at the beginning of October, and the Neurogenetic Clinic at OHSU on the 16th, UCLA initially planned for us to have an outpatient consultation with the doctor, that would last ~1.5 hours, in late November. They figured that with all we've been through, and with all we're going to go through in the next couple of weeks, there'd be nothing left for them to do but review her records and have a look. WRONG! After trudging through her 141-page (high-graded) file, they called back today to have her come as an inpatient for three days, and the whole team (5 docs) will be consulting on her case. The list of tests is already being drawn up.

It's a strange feeling, having all of these doctors appointments. On one hand I'm thrilled that they are so interested in her and helping us find a diagnosis for her. On the other hand, the fact that these world famous docs are taking such an immediate interest in her is a little bit scary. Part of me wishes that they would review her records and say "Oh, she's fine, just a litte behind, nothing to worry about, you don't need us." But, over and over again they squeeze her into their schedules as quickly as possible, for which we are truly thankful.

Now, on to the next big task: Compiling her records & photos to send to the National Institutes of Health for the genetics review. This one is kinda scarey, too. I keep putting it off because I tell myself that I need to send a recent photo, and I don't have one more recent than July, so then I need to get my pics uploaded and ordered. I guess I'm just thinking of excuses to not do this, even though I really want to. But don't want to. But do want to know what is "wrong" with Jordan. But don't want to know what is "wrong" with Jordan. It's a double-edged sword for sure, but in the lonnnngggggg run we all agree that it really is better to know, even if its bad. It's not like any of us couldn't be hit by a bus tomorrow. . .