Still on the path

Micah had a PET scan two weeks ago, and we finally had a chance to talk with his epileptologist (Dr Nangia) about the results. As we expected, the information was not revolutionary. In her opinion, the PET scan is consistent with the information from the EEGs and MRI, which means she is still at this time recommending surgery to remove the abnormality in his brain. But she still wants to do one more test, a magnetoencephalogram (MEG) that does brain mapping. This should help pinpoint with more precision the place(s) that most need to be removed in order to have the best outcome from surgery, which we hope will be seizure freedom for life.

Getting this data should also be able to lessen the risk of damage of some sort to vital function in the surgical process. Since the abnormality appears to be in the left frontal lobe, where language is lodged, we want to make sure that this procedure is as safe as it can be at preserving the language Micah already has and, we hope, improving it long-term.

So, the next steps are these:
1. A MEG (pending insurance approval)
2. A complete baseline evaluation with a neurodevelopmental psychologist.
3. Another overnight video EEG (grr, those things are brutal)

And once those things are complete:
4. Dr Nangia will present Micah's case to a Neurology Conference at Northwestern-Feinberg SoM, which will include all the neurologists, epileptologists, neurosurgeons, interns, residents, fellows--if they work with brains, they are there.
5. We will meet with Dr Nangia to hear the recommendation of the team.

And if the recommendation is to do surgery:
6. Meet with neurosurgeon and Dr Nangia to learn more about the procedure

As you can see, this isn't going to happen anytime soon. We're looking at June, at the earliest, maybe July. Which is actually fine, since Micah would be out of school for the summer at that point, and it would happen at the new hospital location in downtown Chicago. Looks like a gorgeous building, and each child has their own room. Expensive, yes, but I can only dream of how much less stressful and more restful that would be, especially after major surgery.

I go through periods where I feel pretty panicky about the idea of surgery. Then at other times, I hope against hope that he turns out to be a good candidate, which might mean we could put this behind us. Not a fun decision to make, but, again, if they recommend surgery, we plan to do it.

We are enjoying this in-between time, while his seizures are well controlled and we see improved development. Micah loves to play outside these days, and can entertain himself for a long time with rocks and sticks and soccer balls, and today, the bicycle pump. Air blowing in your face is hilarious.

[imagine fire alarm noise here]

So, did you hear that some kid pulled the fire alarm at daycare? Yep. That was my kid. This is the news that greeted me at Thursday's pick-up. Micah is curious about every thing--what it does, how it works, etc. Maybe it is surprising that it hasn't happened before. After all, a fire alarm is a shiny red box on an otherwise boring wall, at just the right height for a tall 3-year-old. Fortunately it was not too cold or rainy that morning. But because they had not had warning, the fire engines actually came. What a brouhaha! The director assured me that it has happened before. I had a talk with Micah in the hall after I picked him up, pointing out the fire alarm and stressing the "never, never, never" nature of it. What seemed to sober him up considerably was when I told him that it was scary for people when he did that. He doesn't like to be scared. Even several hours later he would randomly say, "People were scared of the loud noise!" I guess we'll just have to see if it sticks. Here's hoping! I'll just tuck that story away for sometime later.

On Tuesday night we will drive to Chicago, and, we hope, stay at the Ronald McDonald house for the night in preparation for Micah's brain PET scan on Wednesday morning. We have to be at the office in Westchester (a suburb of Chicago) by 7:15am. He will be sedated and injected with a glucose tracer for testing purposes. We plan to come back home that afternoon after he comes out of recovery. We probably won't know results for a week or so, when we might know more about whether or not our doctor will recommend surgery. I try not to think too much about that yet. For now, though, we are just enjoying the seizure-free, keto-free life. And even the things, like fire alarms, that make our otherwise normal life, um, interesting.