Hello there.  Well, after a great chunk of time with no "big" seizures, they are back and bad.  The last 2 days Cody has been up all night seizing.  And I by his side.  Last night there were 7.  The night before, 6 in 2 hours.  We had to give him diastat - a rescue med.  It just sucks.  We are looking down the barrell of VNS surgery on Aug. 29th + a muscle biopsy while he's under anesthesia.  I want to throw up as I write that - imagining someone slicing my child open.  Right now, I can't even imagine going through with it.  It's so hard doing something permanent - once the device is "in there" it never comes out.  I'm really struggling with the decision and finding myself wanting to buy more time to try to get his seizures under control with meds.  Yet every time he seems to get a leg up on the seizures, they come back with a vengeance like the last 2 days.  He's not sick...his gastro issues aren't flaring...I just can't imagine why these seizures have collapsed him out of the blue. 

Please, if you find time, pray for this surgery.  We need guts to go through with it.  We need God's favor upon Cody's brain responding to the stimulating device.  And more than anything - we want peace knowing this is the right decision.  Voluntary surgery - what a concept.  And how many times do I have to be warned "this is only palliative...this won't take away his seizures...it will at best reduce them."  I GET IT.  This *may* improve his (and our) quality of life.  50% chance it will work.  And if it does work, he stands a chance of his seizures being reduced by 50%.  Big whoop.  Guess I'm feeling sarcastic.  I'm glad for any hope - but it sure feels thin, ya know?  We have two "pre-op" appts. the week of the 25th where they do all kinds of work-ups, evaluations, "neuropsychiatry" interviews.  They called and said, "yes we need to meet with Cody and evaluate his reading levels, his vocabulary, his reasoning skills."  I said....."ummmmm....you realize he's about equivalent to an 8 month old?  He can't read, he can't talk, and reasoning....well you're not going to be able to tell much by watching him."  They said, "oh, then we'll just need to interview you about Cody."  Sigh. 

So there you go - surgery or no surgery?  I'll keep you posted.  We can postpone - but after questioning our neuro about it, he emailed me:

"If there are any mechanisms for reducing the medication burden, I think whatever this method might be, should be considered. The up side is that the VNS might work and reduce seizure burden and therefore may lower medication threshold (meaning lowering the dosing). Some small studies have shown that the VNS might help cognition (weak studies but suggestion of efficacy). If it does reduce seizures, then we have strong evidence that it alters the CNS hard wiring, which is a good thing in seizure reduction. The down side is that it might not work or that it might work but not allow much in the way of medication change."

Lots to consider.  It has been my prayer Cody would miraculously go seizure free before Aug. 29th and we wouldn't have to even consider this.  Of course that's still my hope but we must proceed with a decision nonetheless.  I just can't imagine going through major surgery and all of the post-surgery Dr. appts. for months where the stimulator is tweaked, checked, and finessed....and waiting the requisite 9 months to decide whether it's "worked or not"....only to fear the worst...that it didn't work; making the surgery and the now-permanent device a waste.  I'm just so tired of trying endless ways to get rid of these seizures.  Yet it's all you can do - you try everything - and then try it all again.  You don't stop.  More meds.  More devices.  More trips to see experts.  Endless. 

And in the meantime, we sit up all night holding our darling as he convulses.  And we never take our eyes off him during the day in case he goes down.  It's exhausting on so many levels.  So there's my gripes.  Thanks for reading - although I'm sure I've thoroughly depressed you.  Sorry bout that.

Here's some interesting news - an article I found on the brain.  So often people ask me why I'm so desperate "right now" about Cody's progress - and I always answer that these young years are the only time a child's brain can develop NEW neuropathways.  This article explains it better than me. 

Love, Shawna

THURSDAY, Aug. 7 (HealthDay News) -- Scientists say they're
gaining insight into how the brain rewires itself as it learns new things,
> potentially helping them move toward better treatments for mental
> illness and brain injuries.
>
>
> Researchers report that a protein appears to tell the brain that
it's time to start rewiring, because new information is coming in.
>>
> While the study only looked at mice, the protein "could become a
> great clinical tool" in humans, said study co-author Takao Hensch,
a professor of neurology at Children's Hospital Boston.
>
> At issue is the brain's "plasticity," or ability to change itself
as it learns. The brains of young children are the most adaptable,
> because they can physically rewire themselves.
>
>
> "You actually have neurons reconnecting from one cell to a
different cell," Hensch said. "This kind of dramatic rewiring happens
> predominantly, if not exclusively, in [early] development."
>
>
> The brain's ability to adapt to new information explains why
children have a much easier time learning languages than adults, Hensch
said.
>
>
> But over time, the brain becomes more settled in its ways. "The
> ability to rewire neurons in that physical way seems to become
much harder with age," he said. "Evolutionarily, somehow it seems to be
> advantageous to stop that process, to stabilize the networks in
your head and go on with life."
>
>
> In the new study, published in the Aug. 8 issue of Cell, Hensch
and colleagues looked at a protein called Otx 2 in mice.
>
>
> Using a test involving the visual system, the researcher found
that the protein acts as a signal to tell the brain that crucial
> information is coming in from the eyes.
>
>
> "It's a surprising mechanism," he said. "It indicates that the
> sensory organs in the periphery -- the eyes at the front of the
head - have a mechanism to tell the brain when the eyes are ready and
> actually seeing something meaningful."
>
>
> If scientists understand the protein's function correctly, it
could mean that "every sensory system has some kind of message to send
to the brain to make it plastic at some time," Hensch said.
>
>
> It's possible that researchers could develop a way to "turn on"
brain plasticity in older people, such as those with mental illness or
> brain injuries. Since the Otx 2 protein sends signals from the
eyes, it may be possible to give treatments through eyedrops, Hensch
said.
>
>
> The findings are important and "start to tell us how external
> information can directly affect molecular mechanisms of the
brain," said Paul Sanberg, director of the University of South Florida
> College of Medicine's Center of Excellence for Aging and Brain
Repair.
>
>
> The research could indeed be used to help scientists find new
drugs to help the brain repair itself following damage, Sanberg said.
> However, "there are still many more studies that need to be done
to understand plasticity in other parts of the brain and how to
> translate it to human problems."