Thursday, March 24, 2016

As some of you know... I'm not so good at Math!

Before I begin explaining my poor math skills - let me point something out; this "journey" with Jenelle, and the documentation and sharing of it with all our friends and family and loved ones and "Internet friends" (sometimes called ax murders) and our friends in the special needs community has taken many different forms.  It started out as a private group e-mail of "updates" sent to friends, family and co-workers.  The main reason for that was simple - I only had to re-live it once.  As things often move quickly and happen fast with a special needs child; so did the updates.

Around 2005 or so; I entered the blogging community.  Because I had saved my original e-mail updates, I decided to copy each one into what you now know as this blog - Jenelle's Journey at Blogspot.  I'm fairly happy with Blogger, especially that it is a free format, so I try to maintain this website as best as possible.  As Jenelle gets older and more stable, the updates are few and far between. Enter Facebook.

I joined Facebook shortly before my 20 year High School Reunion in 2008, and ironically only a couple of months before my cancer diagnosis.  Talk about taking much needed writing therapy to a whole new level with Facebook... Brett and I were once again able to instantly update and connect with everyone about not only my health, but about Jenelle as well.  Again, therapy because we only had to re-live the madness once.  As Facebook grew, they started this thing called "pages" and naturally, I started a "Jenelle's Journey Facebook Page" to link to blog posts here, because believe it or not - some of you aren't on Facebook, and some of you are only on Facebook, and aren't really familiar with the blog! (funny thing, my Mom doesn't really know the difference between either platform!  She just calls it my Jenelle's Journey page/thingy.)

Choose your social platform I guess - to each his own.  However, I've noticed that it has been easier for me to update more frequently with Facebook these days than it is to sit down and write a blog post.  As I was about to share with you the humiliation that is my math skills, it occurred to me that this "blog" was not as up to date as the Facebook page.  So a solo reader of the blog would have absolutely no idea what mathematical error I had made recently because I hadn't posted it here, but rather I updated on Jenelle's Facebook page!  So, in order to bring the blog up to date - I've decided to start copying some of the recent updates from Facebook here at the blog, and back dated them accordingly.  So, don't worry, you didn't miss the three updates that magically appeared here recently. And well, if you did, read those first so you can be up to speed! :) Either way, each site will mirror the other.

So, Jenelle's VNS Aspire was implanted a month ago.  Since implantation, we've had two follow ups with the neuro surgeon to "turn up" the intensity of the electronic stimulation she gets every 30 minutes.  At her last appointment on March 17, the intensity was increased from .50 Milli-amps, to .75 Milli-amps for 30 seconds, every 5 minutes.  We are seeing wonderful results and in fact, I haven't physically witnessed her have a seizure since March 8!  That doesn't mean she isn't having them - she is.  IN FACT, here is where I went wrong on the math.

At her first follow up, I happily reported that Jenelle's VNS had automatically activated itself 13 times!  Thus, implying that she had only had 13 seizures since it was implanted.  I was quite proud, as I had only logged 7 actual seizures that I had physically seen myself.  Here's the photo of the doctor's feedback - let's see if you can catch my math error:

So, I excitedly reported that the device had "auto-stimulated" 12 times since implantation!  Yay, wahoo, way to go... except, in reality, it "auto-stimulates" 12 times per DAY!  Oh.  And really, that is not so bad.  The fact that it is sensing an increased heart rate that may or may not be a seizure, and that is it properly activating to help stop that potential seizure is wonderful.  But 12 times in 12 days vs. 12 times a day for 12 days is drastically different.  My bad.  Again, the overall feedback is really good.  The device is working as it should, but the numbers are mind boggling.

As for Jenelle, we are seeing less seizures.  Again, that doesn't dismiss them altogether.  At her second follow up on March 17, that feedback showed that the auto-stimulation increased to 13 times a day.  And remember, the device automatically activates itself and sends off an electronic stimulation in response to increased heart rate - which may or may not be a seizure.

Overall, we are seeing a quieter, more calm Jenelle.  She coughs at times, and drools a little more than she used to, but in general, she is "calm."  And again, we aren't "seeing" seizures.  She is also a bit more vocal, and seems pretty happy. All of these are great things to see and report -and most of all, it all indicates that the VNS is doing it's job.  Our next "tune up" is scheduled for March 29 with Dr. Tran.

And now, to reward you for insanely long and wordy update - I give you recent photos taken of the family at JD's Boys Basketball Banquet.  JD is almost finished with his freshman year, and is going to be getting braces in a couple of week.  FUN!  Hopefully when the braces are done, JD will actually smile and show his teeth again in photos - a mom can only hope!  Thanks for continued prayers - as always, I'll keep you posted!

Family photo after the banquet.

Jenelle wearing her Easter dress for Big Brother's banquet.

Tuesday, March 08, 2016

First Post-Op Follow Up!

Since it was implanted, Jenelle's VNS has "activated" itself to stop a seizure 12 times. (Over 13 days) On average, it is programmed to send auto stimulation 259 a day. It's only been 13 days, but I like the information and feedback we are getting!
I myself have been keeping track of all seizures I see - I had marked 7.
Pretty cool!