It’s never been easy for me, that highly coveted virtue — Patience. And it’s particularly hard these days when we feel like we have so much hinging on Reese’s prognosis. A mercurial conversation pending new test results, doctor consultations and her daily progress report. It has been flabbergastingly complex how the inter-workings of her system, the meds, the therapy, the tests, all are co-dependent and yet, we need something to stand out to allow the other pieces to fall into place. Preferably into a logical place, and not just a thousand pieces crashing to the floor. And I think that’s what I fear the most. Bryan and I are planners. We like to dream and we like to build what if scenarios and then build dependencies and plans, to a fault. So right now we are facing literally more scenarios than we can mentally handle and every day it feels like a different one is taking the lead.
Why the ramblings? We spent over an hour with our smart, energetic (and most importantly) tenacious epileptologist — a neurologist who only deals with epilepsy. (I love btw that Word doesn’t know how to spell it either). And so here’s the update in the most logical way I can find to explain what our next set of scenarios is.
The update:
Her multiple weeks on steroids being wired like a junky and equally agitated weren’t for naught. Her brain activity shows a positive response that means her repeat (out of control) seizures would be less likely. And her development definitely took a leap forward. So while we had a normal EEG report as of April 10, we were afraid to share the news, not really understanding the full impact. We HAD an appointment for this coming Wed. with our epileptologist again, but we don’t need it now.
Next steps:
Reese is back on steroids. For joy. Doctors think her positive response to the previous steroids means she just didn’t get enough for her brain to fully heal. Seriously. This is the thinking. Sooo, we get to try another high dose, get an EEG again in two weeks (can we get a frequent visitor card?), and then depending on how much better her brain activity looks will determine how much longer she will be on steroids.
At the same time we continue to wait for several tests to come back that they ran while we were in the hospital. The potential scenarios are autoimmune, some rare genetic mutations that haven’t been fully mapped yet, or a metabolic option having to do with breaking down creatine in the brain.
No matter what, the outcome is Reese has something rare. And two of three seem to be fairly treatable.
OK With Change 