A Repost Update

The below is an update from Megan. I have added the latest informattion.

Catching you up
So, here's the deal. Ella's been having these strange facial movements for approximately the last month. I haven't mentioned them here previously for several reasons. For starters, they were isolated enough in the beginning that it was hard to know if I was just imagining things; enough time would pass between events that I would convince myself that it was just rare and normal baby stuff. Also, let's be honest, I've been in denial. Lastly, and this one's hard to explain, when you have a (not sure what to call her but let's go with) chronic child, it's difficult to be objective about what you see; you don't want to automatically assume the worst, but you know that the chances of what you are seeing being more of the disorder are fairly high so it therefore shouldn't be ignored. Oh and one more thing, when writing about aforementioned chronic child on my blog, it's important to me that I'm not constantly crying wolf with regard to her status because I know that many others are invested in her well-being too.Instead of blathering on and on here about what Ella's face may or may not have been doing, somewhat sheepishly, I first called about these facial movements (along with the few potential head drops I had seen) to Ella's neurologist right before Thanksgiving. Dr. B had me increase Ella's dosage of Keppra (her only remaining anti-seizure med) and then saw her in the clinic the following Monday. At that appointment, the doctor asked me to describe what was going on, and I described the events as best I could. She also asked about frequency, and I felt completely silly having to admit that it hadn't even occurred to me to keep track of that (again, I think denial played a role here). I couldn't even ballpark it for her. Dr. B told me that we would continue with the new dosage of Keppra and follow up in 2 months. She also asked me to try to get this stuff on video, which I hadn't thought to do. Another duh! moment for me.It took me more than two weeks to catch anything on video because the strange movements are brief and infrequent. Two nights ago, though, I finally did observe several in a short time frame and ran to get the camera. I filmed her for about a minute, then I uploaded the clip to youtube and promptly sent the link to our local neuro Dr. B and Dr. C--one of the foremost experts in infantile spasms. I asked them what they thought she might be exhibiting. What I really wanted to say was, "Please tell me the infantile spasms haven't come back, please tell me the infantile spasms haven't come back."Dr. C emailed back within a few hours. My admiration for this man grows with each interaction. He said that Ella was adorable and that he could tell she'd made developmental progress since the first video. His guess is that it is either seizures or a movement disorder. He recommended a video EEG to determine which one. In a second email, I asked Dr. C if they did end up being seizures whether he thought they were infantile spasms. He replied that he suspected them to be partial seizures instead. So that's a relief for the time being (though partial seizures can evolve into IS). He also further clarified that he was not terribly convinced that Ella had a movement disorder--which is usually a genetic malfunction in nature and has nothing to do with her brain malformation--because it would be unlikely that she would have two rare and completely unrelated problems. Seizures just makes a lot more sense. He then reiterated the need for a video EEG to confirm.But there's the rub. As far as I know, long-term video EEGs (the kind of EEG he's talking about which typically run for a minimum of 24 hours) for children are not performed in Northwest Arkansas. So, if our local neurologist (who apparently isn't an emailer) requests a video-EEG (and I certainly hope she does) (after I take a hard copy of the facial movement video to her tomorrow), I think we would have to return to Arkansas Children's Hospital for that. Which is three hours away. During the week of Christmas. Not great. But God is good all the time, so we'll manage, with Him as our strength.
===============
To sum up: Ella's having new facial tics, caught on video and sent to doctors, partial seizures suspected, needs EEG confirmation, waiting for actual order from OUR doctor, may have to go to Little Rock (and if so, most likely sooner than later), God is still good.

UPDATE

Ella is scheduled to have a video EEG tomorrow at 7:30AM in Lowell. Meg has to wake her and keep her up starting at 4AM. We are praying that she has her tics so that it will be captured on the EEG so that we can get a diagnosis and subsequent treatment. If the 4 hour EEG doesn't capture the tics, we have to go to Little Rock for the 24-48 hour EEG.
===============
There is another story to be told here, one that involves abnormal labwork from Ella's hospital stay and pending follow-up testing for some pretty serious disorders. But it is late, and I'm having trouble keeping my eyes open. Besides, other than the lab levels that were outside of normal limits, she's had few if any signs or symptoms of the disorders in question. I'm fairly confident that her follow-up tests will come back normal. Specifics on this to come later.

UPDATE

The labwork came back abnormal again, but in a different way than it did back in July. We are still awaiting other test results and will undoubtedly have to get new tests done due to the second abnormal result from the initial test in July.