Just the facts, ma'am

We had a follow-up appointment with Ella's neurologist today. I continue to be encouraged by Ella's progress. A month of seizure freedom and counting! After today's evaluation, Ella is "over the hump" to quote Dr. B and does not have to return for 6 weeks (up to this point, she's been seen weekly by the pediatrician and the neurologist in an alternating fashion).

Ella only has six more days of ACTH injections left, and she has navigated these potentially dangerous waters with minimal side effects--her blood pressure has been high normal & stable, her labwork has stayed within normal range for the most part (blood glucose was a little high last time but her urine dipsticks have all been fine), she has remained infection-free, and even the irritability thing that commonly occurs on steroids hasn't really been a problem for us. I am quite relieved to see this chapter coming to a close, I gotta tell ya.

At our last neurology appointment two weeks ago, I asked Dr. B, "What if the seizures come back?" And really I meant the infantile spasms because those are the seizures that I for sure never want to see my girl have again. (It's not that they're terribly disturbing to see, in fact they are quite subtle and harmless in appearance, but I know that they are absolutely devastating to her development long-term.) In answering that question, Dr. B said that she would not be surprised if Ella had another seizure, nor would she think, "What have I missed here?" because the brain malformation will always be there and is very likely going to cause further seizure activity down the road. However in answering that question, I think she was talking about seizures in general, and not infantile spasms specifically.

So this afternoon, I told her that I understand Ella is at risk for more seizure activity in the future (focal, partial, myo-tonic, tonic-clonic you name it), and I even said I think I could learn to live with that, but what I was really afraid of was a return of the I.S. seizures. She responded, "Well, I think she's doing really well" or something along those lines. I took this to mean that she can't make any guarantees but that she is very hopeful of Ella's chances of no further I.S.

As far as medications go: we are stopping the antibiotic right now, finishing up the ACTH wean which will end next Monday, stopping the Zantac a week after that, and will be done with the phenobarbital after a slow wean lasting six more weeks (too fast and she might suffer withdrawal which could mean breakthrough seizures). At that point, Ella will be down to "just" the keppra twice a day, which will be her long-term anti-seizure med and will be increased as she gains weight to maintain a certain therapeutic level in her system. At some point in the somewhat distant future, we may even have a trial off all meds entirely, just to see how she does. Man, am I longing for THAT day!

With the end of the ACTH therapy, Ella will no longer need blood pressure and urine glucose checks, so I am going to ask that she be discharged from home health next week as well. It is starting to seem like a near return to normalcy is within our grasp.

Additionally, physical therapy kicked off today. Ella will go twice a month for now, and though it is to keep a close eye on her progress, it is mostly a chance for me to learn ways to "provide opportunities" for further development while working with her at home. I think Ellie did really well during her session, especially since she had fallen asleep on the way there and had to be woken up for it. She was a good sport for a long while, but then after about forty-five minutes, she made it pretty clear that she was through for the day. She started grunting and tuning up for a fuss, so I picked her up and snuggled her in my arms. Immediately, she burrowed her face into my chest and covered her head with her lovey as though to say, "Quick, hide me from that mean lady over there."

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I have really good intentions of writing about some of my thoughts and emotions since we've been home from the hospital, and I spend a lot of time thinking about what I would write on such a topic, but it has yet to make it on the blog other than a tidbit here and there. However, it IS coming, I promise.

♦