Wednesday, June 6, 2012

Completely Baffled

Owen, Dex, and I drove home on Monday afternoon, right after Owen was released from the hospital. Owen did an amazing job; no crying, no whimpering...he was actually kicking excitedly post surgery. As a matter of fact, Owen is still doing unbelievably well. Here is a list of the improvements that I've seen already:
1. GAVIN AND I HAVE NOT WITNESSED A SINGLE SEIZURE SINCE SUNDAY (pre-surgery). This is unheard of; Owen usually has AT LEAST two every single day, if not ten.
2. Owen's eye contact has improved dramatically; it doesn't come and go. He has so much more passion in his eyes. He already tracks so much better as well.
3. His mood is awesome. He seems happy, comfortable, and "with it" all of the time.
4. Owen's sitting has taken a drastic turn for the better. He has on multiple occasions sat for almost an entire episode on NickJr. Before, he would barely sit for a few minutes on a good day. He is no longer throwing his head back like he used to pre-surgery....at least so far he's not.
5. He hasn't been taking naps. This is, I guess, a good sign, considering the seizures make him tired. No naps must equal fewer seizures, right?
So here's the weird irony of it all....the chip hasn't even been turned on yet. Yeah. That's the same old Owen in there, but for some reason, he's taken this leap of improvement without a working chip inside of him. I don't get it. Gavin and I have a couple of theories for this change. One, we think these improvements might be attributed to the liquid diet we've been giving him the last couple days. There is no doubt that Owen has most of his seizures during mealtime; maybe the lack of stress from swallowing chunky foods is helping? The table foods might also have some ingredient in them that cause a seizure to happen as well. The other theory we have is that the pain medication he's on might have something to do with the decrease in seizure activity. So far....we don't care what it is, we are just going to continue what we are doing, and hopefully this good streak will keep on coming!

Thank you to everyone for the kind words and support. I was a little more anxious--and nauseous--about this surgery than I thought I would be, but now that it's over, I am excited to see what the next few months bring for Owen!

4 comments:

  1. Hi. I have twins with Dravet Syndrome. Is that what Owen has?? Last blog I could find about it you were still trying to nail it down. We live in Seattle area.

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  2. Oh....and both my 18mo old boys got a VNS placed last Thurs.

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    1. I am so sorry, I just saw this. Email me at kileyklug@live.com or add me on Facebook, and we can talk. Yes, Owen has dravets syndrome. Hope to hear from you soon!

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