Back & Forth

Finally home from LA. We were delayed from our planned Thursday arrival, due to rescheduling of her MRI & MRS. Devon made it home LATE on Friday night, and I was at PDX by 8:30am the next morning. Phew!

We had a frustrating & annoying day at the hospital on Friday trying to get Jordan's MRI & MR Spectroscopy. They made her quit eating at midnight in case she got moved up in the schedule (yeah, right, how often does that happen! I argued with the doctor). Poor thing, she didn't get started until until 4:30pm. Then, I had to ARGUE with 2 anesthesiologists to stop them from using Propofol to sedate her. The PET scan anesthesiologist had an impossible time with it on Tuesday, and wrote quite clearly on her chart that should never have Propofol again. I argued long and hard with the first one, until he turned it over to yet another doc, and she only agreed to use general after she found that the tests would take close to 2 hours. Maybe they own stock in the company that makes Propofol -- otherwise I don't know why they were so adament about using it. Oh well, whatever, it's over now, and the tests went well.

The doctor called last night with the results of all the tests that "the team" reviewed. As usual, nothing new. . . . She has a relatively small brain, no seizures, no need for meds or surgery, and "it looks like something genetic."

Back & forth, back & forth, neurologists think it's genetic/metabolic/mitochondrial, and the geneticists think it's a one-time brain insult, which is neurological. It's the same thing over & over. I doubt they'll ever agree.

Moving Forward: We have a few more local doctor appointments over the next few months, but basically we're going to kick back and try to survive the holidays, the birthdays, the anniversary, the new year. Then I'm going to continue, but this time I'll focus on finding something to make her life better rather than on a diagnosis. Now that she's a bit older we're going to start supplementing her diet, and I'm going to do some investigations and trials on different diets that might make a difference. In the cases of metabolic or mitochondrial diseases, food is the key. In many diseases of this nature, adding & subtracting vitamins, minerals, and nutrients can slow the biological processes causing the problems. But, since she has no diagnosis, it will have to be trial & error on our behalf. I hope I can find a dietician/doctor who is interested in helping us.

So, that was UCLA.