Wednesday, October 04, 2017

October, my favorite month...

Well, it's October.  I love this time of year.  I love fall. And most importantly... I love this month because it is Jenelle's birth month.  And we are long, long overdue for an update.  Let's see if I can catch you up.

June 2017

Jenelle graduated from Middle School and amazed us by walking in her promotion ceremony.  We had a final IEP for transition to High School and won the battle for a one on one aide.  Even more exciting... her 1:1 Aide will be the same woman who has been working with her for the past 3 years.  Sandra is in the photos below helping Jenelle walk at her promotion.  We love Sandra, and we are so excited to share Jenelle's high school experience with her.

Jenelle getting ready for the ceremony.

Jenelle and Sandra anxiously waiting to go onstage.

Our pretty and proud 8th Grade Graduate.
As for her seizures, at the end of last month, we had made many, many changes.  We had our follow up with Dr. Tran at the end of June to discuss the changes.  The addition of Banzel seems to be helping, but still Jenelle seems too drugged.  We decided to wean off of Onfi as it is most sedating.  As the saying goes, one step at a time, so this was the only change in addition to increasing the VNS just a touch.  Dr. Tran mentioned that she was planning to attend a seminar this summer about using the VNS Aspire as a solo for treatment of Lennox Gastaut Syndrome, so she was hoping to bring back some new information for Jenelle.  We scheduled our next appointment for August.

July/August 2017

Summer is always challenging for Jenelle because of the changes in her daily routine.  School is different because ESY (extended school year) extends her special education through the end of July.  She has more time at home as summer school ends at noon. And lots of changes in care givers.  Needless to say, Jenelle can get a little cranky.

We saw better seizure improvement over the weeks and when our follow up with Dr. Tran happened on August 18, we were at our best seizure control yet.  Dr. Tran had presented Jenelle's file at her conference and returned with a new plan on appropriate settings for her VNS.  Finally, before school starts she was finally doing better.  So well in fact, we weaned Jenelle off Ethosuxamide!  Two drugs gone in one summer!  As a result, we have our little girl back.  She is more alert, more vocal and stronger over all.  We are still seeing daily seizures, but nothing like we were seeing in May and June.  It's encouraging.

4th of July with Nana!

4th of July with Grandma!
Jenelle started high school at Tustin High School on August 22 and has been doing as well as expected with the changes.  A little cranky, but well overall.  Both Jenelle and Jack are very busy, and it's challenging with both at different high schools.

First day of school 2017  - our Freshman (Jenelle), Sophomore (nephew Trevor) and Junior (JD)
September 2017

Two kids, two separate schools.  Jenelle is a Tustin Tiller, and JD is a Foothill Knight.  On the day of the cross-town rivalry football game, the Tillers won the game.  I told JD that Jenelle had bragging rights for the rest of the year, and he responded with "Good thing she can't talk!"

After the cross-town game. 

We also added a new kitten to our family.  Currently, her name is Bow (as in Rainbow) but the boys (Brett and JD) are trying to come up with a new name.  I affectionately call her "itty bitty" and it seems to stick.  Jenelle enjoys watching our newest pet run around at full speed, and our 11 year old Slider is getting used to her as well.
Picking up itty bitty Bow from the adoption event.

Bow introducing herself to Jenelle who
isn't too pleased.

Jenelle is scheduled to see Dr. Tran again in October, and so far so good with the medications and VNS settings.  In a few weeks, Jenelle will be 15.  That is 3 times her life expectancy.  Can't imagine life without her.  "Got along without you before I met you, couldn't get along without you now!"

So that is the latest.  Thank you for your continued thoughts and prayers.  I will continue to keep you posted.

Thursday, May 04, 2017

May Video EEG Update

So, we've been fighting new seizures with Jenelle and unfortunately, things have not improved.  On Monday, Jenelle was admitted to CHOC for another Video EEG - we got home on Wednesday.

We gained a lot of information from Jenelle’s latest EEG; mainly that Jenelle is having a lot of seizures.  In fact, not just one seizure type, but three different types of seizures.  Basically we confirmed her seizures are getting worse, and while we still have options, those options are growing slim.

Lennox Gastaut Syndrome (LGS) is characterized when the patient has multiple different types of uncontrolled seizures.  For Jenelle, her LGS presents with mainly tonic and absence seizures.  A known fact with LGS is as the patient reaches their teens, the seizures get very, very difficult to control.  While Jenelle’s seizures seem to be getting worse, it may simply be the nature of her epilepsy condition.

Here is what we learned this week:

1.       The seizure where her eyebrows twitch ( the “Groucho Marx” seizures) are not complex partial seizures like we thought, but actually “atypical absence” seizures.  No matter what we name it, it is still a seizure.  This seizure responds well to the Aspire Vagus Nerve Stimulator (VNS) and is not a real emergency for Jenelle unless it goes over 15 minutes.

Last Thursday, before our admission, Jenelle has a 10 minute atypical absence seizure.  We used Diastat at 8 minutes, and called 911 for a ride to CHOC Emergency.  Her VNS magnet did not stop the seizure, and it was the first time in over a year we had to use Diastat.  While we could have waited 15 minutes, we didn't as it had been a while since we were unable to stop a seizure.  The ER reported that Jenelle was hypoglycemic, but our neurologist said that probably had little to do in bringing on her seizure and more likely due to her having not eaten.  So, blood sugar counts are not really something we will need to monitor.

2.       Jenelle is still having “Tonic” seizures (the new one) but they are shorter due to the VNS self activating with the increase in heart rate.

3.       Jenelle is now having “epileptic spasms”, which look like she is doing a tummy crunch, then her arms stretch out and she drops her head.  Same as the seizures above, this is not an emergency unless it goes longer than 15 minutes. This seizure is similar to the Infantile Spasms, which was Jenelle's diagnosis as a baby.  These seizures come in clusters.  The good news is that the brain wave activity with “epileptic spams” is not as dangerous or as damaging as Infantile Spasms (i.e. no hypsarrythmia).  From our EEG data, Jenelle tends to have clusters of this type of seizure between 4am and 6am.  We had no idea because obviously, we are all asleep when this happens.

What we are doing:

1.       Our Doctor adjusted the settings on Jenelle's VNS to go off even more frequently and at a higher voltage.  This seems to help, but it also means that when we swipe the magnet to activate the VNS on our own during a seizure, we may not get a seizure to stop as the magnet will not activate if the VNS is in a cycle.  And of course, because the automatic cycles are more frequent, the magnet may not always work.  It seems the higher setting is helping, but we really won't know for a few more weeks.

2.       We are decreasing Felbamate.  Jenelle's latest labs showed that she was on too high a dosage, so we are back to 900 mg, three times a day.

3.       We are increasing Ethosuxamide as it seems the atypical absence seizures returned when we lowered the dosage a month ago.

4.       We’ve added a new drug (but not new to Jenelle) called Banzel.  Jenelle was on this drug a few years ago under the supervision of Dr. Shields.  We stopped it because of insomnia, but felt we need to give it another try to see if it can work in conjunction with Felbamate.  She will be on the theraputic dose in four weeks, so we will know more at our next visit.

The doctor wants to see her again at the end of the month, and is going to watch her closely. The EEG confirmed that there is a huge difference in stopping the seizures when using the VNS magnet, so that is definitely helping.

Bottom line, Jenelle’s seizures are getting worse, and we are trying to control them.  If Banzel doesn't work with the new cocktail, our next drug to try is Fycompa.  Dr. Tran has only used that drug twice, but had very bad behavior side effects with her patients.  Because Jenelle is already on a high dose of Felbamate (and Felbamate is also know for bad behavior side effects) we thought Banzel was the better choice for now.  After that, unless something new is discovered, we are really out of drug options.

Our next choice is medical cannabis, or brain surgery (corpus callosotomy).   If I had a nickel for every time someone asks if we've tried marijuana; I'd be a billionaire! :)  We are not against it in any way, but it still is not FDA approved, and it can be very, very expensive.  When it comes down to the choice between medical marijuana or surgery, we'll try the medical marijuana.  With our luck, when we reach that point there may be studies and/or government approval to help us out.  The Laws are always changing!  It is something to think about down the road, and we realize that we are getting close to making it a reality.

So, overall - it’s not really news we were hoping to hear.  But we've always known that Jenelle is very complex and this is just the nature of her epilepsy.  We realize Jenelle will never be seizure free, but we are committed to doing everything possible to make her quality of life the best it can be.

Thank you again for all the prayers.  As always, I'll keep you posted.

Tuesday, February 21, 2017

New Year, New Seizures, New Plan of Action!

Being that it is already the end of February, I guess it's too late to make a New Year's Resolution to update more often! ;)

Since the last update (September?) Jenelle had been doing very well seizure wise, and actually ended her food strike and started eating by mouth again! Things were going really well seizure wise until we had her home for Winter Break.

Prior to the Break, we were seeing one or two seizures every third day.  Yes, you read that correctly... every. third. day!  She was doing fantastic - making new sounds, showing interest in things and excitement.  Ah, the wonderful life of seizure control!  But as it does with kids - they grow and things change.

Around the holidays, we noticed that Jenelle's seizures were increasing with a new type of seizure.  This new seizure was quick, and only lasted a few seconds. Jenelle would be sitting (or standing) and her arms would jolt out straight and she would drop.  Sometimes so violently she would throw herself out of a chair! Sometimes we activated her Vagus Nerve Stimulator ("VNS"), and sometimes the seizure was so quick, we couldn't swipe the magnet in time.  This continued into January until we started seeing about 10 to 15 of these new seizures a day.

In early January, Jenelle had a physical and we found that she had gained 25 pounds! YAY!  Once I realized that, I put in a call to our Neurologist to break the news about the lack of seizure control that we were seeing with the new seizure presentation.  In general, the doctor and I suspected we needed to increase her medication, however before making changes blindly, our neurologist recommended a quick overnight Video EEG to confirm the type of seizure we were seeing.  We were admitted last Thursday to CHOC at Mission due to a cancellation, and Jenelle was hooked up to a Video EEG very quickly.  This quick EEG ended up providing very valuable information!

I had been describing the new seizure as a "jolt with a drop" - which made our neurologist suspect "Atonic Drop Seizures."  This would be new for Jenelle, and possible require a different seizure medication than the ones she was currently taking. However, while hooked up to the EEG, Jenelle had at least 10 of the seizures we were concerned about and per our neurologist, they were not "Atonic Drop Seizures" but rather "Tonic" seizures.

Most Lennox Gastaut patients often suffer from "Tonic" seizures. The last time this type of seizure was uncontrolled in Jenelle, her arms and body would get stiff, her lips would turn blue and they lasted almost a minute.  Most people are familiar with the "Grand Mal" seizure, which is now more commonly described as a "Tonic Clonic" seizure.  Well "Tonic" seizures are similar, but with out the convulsing.

The good news is that an increase of "Tonic" seizures means we need to increase Felbamate; which makes sense given her huge weight gain.  The ever BETTER news... the reason I didn't recognize these seizures as "Tonic" seizures is because Jenelle's VNS was working.  At the onset of a "Tonic" seizure, Jenelle's heart rate would spike and trigger the VNS to activate on its own to short circuit the "Tonic" seizure.  So, instead of the seizure going almost a minute as it did in the past (and sometimes with out oxygen), the VNS has stopped the seizure within 10 seconds.  AMAZING HUH?  Next to the G-Tube, the VNS is the best decision we ever made!

Jenelle went home the next day with a new plan to increase her Felbamate and tweak some of her other medications.  After 3 days increasing to the new dose, she is having less seizures.  She is happy... we are happy ... and I feel like we won the latest round only to fight the seizure monster again another day!

Here is a photo from our brief hospital stay (love those Snap Chat filters, even if I don't know how to use Snap Chat!)


Monday, September 12, 2016

Back to School with Lots to Update! Our new 8th Grader!

This summer for me was emotional and odd.  However, with the slow change in seasons as we move into Fall (or just slightly lower temperatures in Southern California) the new routine for back to school is a welcome one for me.

Where to begin with Jenelle?  Well, so far, we are seeing lots of exciting and wonderful changes in Jenelle's seizures since implanting the VNS.  We've been meeting with Dr. Tran every 4 to 6 weeks, and we've begun to wean some medications and think we may now be at therapeutic levels with the VNS.  Or, as Dr. Tran calls it, the "sweet spot!"  Before she had the VNS, Jenelle's complex partial seizures were daily, and averaged around 1 to 3 minutes in duration. Sometimes 10 - 20 seizures a day.   We now see seizures that last 10 to 20 seconds in duration, and the most in a day around 10.  Oh, and we are getting rest days with no seizures - I think she has a "bad" day every third day where she has small clusters but is mostly unaffected.  Definite improvement!

Also, we've begun the slow process of weaning and lowering the dosage of Jenelle's many medications.  This effort has helped with Jenelle's GI issues as well.  If you recall, a year ago we had to put Jenelle back on formula after she had lost 25 pounds in a 5 month time frame.  Jenelle started Ensure Plus, and slowly gained back her weight.  Unfortunately, constipation led to loss of appetite, and of course with the weight loss, she was over drugged.  Special needs kids are so very sensitive - one small thing happens and the domino effect takes over.  Weight loss led to over-dose in drugs, led to feeding issues, led to constipation and nausea... hopefully we are just getting out of the vicious cycle.

The constipation issues were getting, well, too much.  Poor Jenelle had little to no appetite, and drooled excessively.  We tried clean outs (a drug called "Golytely" and pronounced Go Lightly, which is the exact opposite of what actually happens after taking it!)  We tried Miralax twice a day.  Prune Juice daily, and yet, Jenelle was still constipated.  Finally, in August, Dr. Idries switched Jenelle to a different formula called Pediatric Compleat.  This formula is food based instead of dairy based, and within a week of switching, Jenelle's BMs were finally regular.   We are now seeing our happy little girl who likes to jump, and who is once again slightly interested in real food.  20% of her daily intake is actually from real foods, and she gets 5 cans of formula, sometimes mixed with fruits and other foods that help promote digestion.

So Jenelle started back to school on August 29 and has the same teacher she has had for the last two years.  She is in 8th grade, and will transition to high school next fall.  We will start touring the different schools soon, and the "big transition IEP" is scheduled for next year.

So things are good with Jenelle and improving - which is always a nice direction to move to!  Here are some photos from Spring and Summer.  As always, thank you for continued prayers - I'll continue to keep you posted!

Nana and her "Grandchildren" after Dad's funeral. From left, Cousin Trevor, Matt, Jenelle, Nana, Eric, JD and Cousin David.

Visiting Grandma at the firework stand 2016.

Sending Nana off on the train to Northern California.

Visiting Morro Bay and the ole' rock.
First day of school 2016 - our big 8th Grader and
new Sophomore, who is so over back to school photos!

Jenelle and her ride to school!

Daddy and JD - Foothill JV Starting QB!

Jenelle and Mommy on a happy and cuddly day.

Wednesday, August 03, 2016

Life happens... and ends.

I can't believe the last update was the end of March.  Then again, I can't believe it is August!  Before I update on Jenelle, I need to write out my feelings about recent events.  As always, writing is my therapy.

This year has kept me on my toes in more ways than one.  Life happens; and sometimes it ends.  My Father, who was 87, passed away on Memorial Day.  It was not exactly expected (i.e. it was not cancer) and in the grand scheme of things, it was quick.  A week before Memorial Day, Mom and Dad had performed with the choir at their Retirement Community and completed 3 performances for other retirement homes in the area.  The next morning, Dad woke up not feeling well.

Dad was admitted that day to the hospital with a "lower GI Bleed" where he received 2 units of blood product.  They stopped all of his medication, including blood thinners.  My Mom called me that afternoon, and I left for home the next day (My hometown is 3 hours away from my home now.)

When I arrived at the hospital to see Dad in ICU, he didn't recognize me and was very agitated.  His face to me appeared very swollen, and his mouth on the right drooped to one side.  Instinctively, I felt that he had had a stroke.  He speech was slurred, and he was strapped in bed because he had been "combative" the night before.  Dad did not have a combative bone in his body.  It was painful to watch, because really he was in pain and suffering.

Excuse my language, but I can only describe Dad's last 5 days in the hospital, and his ultimate death as a huge "cluster fuck."  As it turned out, Dad's lower GI Bleed was caused by a new medication he had recently started for a heart condition known as A-Fib.  Because he needed blood product in the ER, they stopped his medications including his blood thinners.  Dad's regular doctor who had placed him on the medication was "on vacation" with his only back up being the "ER."  While the hospital was bouncing him around from Resident to Resident trying to figure out why he was bleeding; we finally were assigned to a wonderful Hospitalist who eventually determined the cause of the bleed.  This doctor also listened to us and finally ran a head CT which found that sometime after his admission (and 3 days before the CT) Dad had a stroke.

At times, he thought I was his Mother, he mentioned that his Mother and Brother (who had passed away 6 weeks earlier) were with us in the room, and he directed music with a tooth brush (Dad was a musician).  He was irritable, incoherent (slurred speech at times), inconsolable, and the medications given to calm him down often made it worse.  We were told this is how elderly people respond in the hospital - the dementia kicks them into a panic mode.  Fight or flight.  Because we had not identified the stroke until 3 days later, Dad aspirated on some food,  which eventually caused pneumonia, and led to infection/sepsis.  Call it a "snow ball from hell", a "train wreck" or a "cluster fuck" - with one thing on top of the other it ultimately led to Dad's death.  And believe me, I'm leaving out a lot of the horrible parts of those last five days.

Dad passed away in the morning on Memorial Day with my sister and her husband by his side.  Mom arrived a few minutes after he passed, and I was at home in Orange County waiting for the final call.  My sister had called me on the way to the hospital to prepare me, so I pulled out my Book of Common Prayer, and read a prayer "to be read at the time of death" during the minute of his actual death.  I even sent a photo of the prayer to my sister.

About 10 minutes later my Brother in Law called to give me the news.  It was that quick. I am at peace with that, and for not being there with him.  The time I snapped the photo of the prayer on my phone was ironically the time of death on his death certificate.  I truly was with him in spirit.

I wrote the eulogy for Dad's service.  It was a beautiful service early in the morning on a very hot June day (108 degrees).  For those not familiar, the Episcopal service is very plain.  It is intended to be that way so that any man, rich or poor, is treated with the same dignity at his funeral.  Because Dad was a Veteran; the military presented a flag to my Mother.  In my opinion, it was probably the most emotional part of the service.

Here are some excerpts from my eulogy:

Hello, I am Kelly, George’s youngest daughter.  On behalf of my Mom and Sister, and our families, we want to thank everyone for their outpouring of love and sympathies during this time.  Thank you also for being here this morning.

There are many words we use to describe my Father George.  Husband, Daddy, Brother, Uncle George, Poppa George, Teacher, Band Leader, Officer, Veteran, and a True Gentleman. Dad loved his family, his music and tradition.

Dad was born on Christmas Day, 1928. Two years later his brother James Arlin, “Jim” was born.  Daddy and Uncle Jim grew up as typical Southern California boys – summers in Dana Point, Junior Life Guards in Newport Beach, and nights out  dancing at Balboa Pier.  Daddy was very close to his brother as they were in the same grade.  Football, Church Choir and Acolytes, Eagle Scouts and eventually University of Southern California where they both pledged together their father’s fraternity, Sigma Alpha Epsilon.  While they were close, they had different personalities – Uncle Jim played football at SC while Dad played in the Trojan Marching Band.  George was preceded in death by Uncle Jim almost 6 weeks to the date.    

After college, Dad served in the United States Navy through the NROTC program, and then onto graduate school at UCLA for his teaching credential in music.  Dad proudly served in the Navy during the Korean War, and the early beginnings of the Vietnam War.  He sailed most notably on the USS Iowa (which we toured three years ago), the USS St. Paul, and the USS Missouri among others.  I believe his love of the military life style fit best with his musical qualities and expertise in marching band.  Both have a sense of order with deep rituals and  Dad loved that.  After the Navy, Dad landed his first teaching job to be the music director at a high school in a small town in central California.  This was the beginning of his years in Lindsay, and where he met Mom.

Dad was the band director and Mom was the home economics teacher at Lindsay High School in 1960.  Their first date was at the Pagoda Room in Hanford, and the story goes that Dad proposed on the first date!  Mom said no at first, but Dad kept pursuing her with roses, songs and dedicating the band’s half time shows to her.  They were married six months later during their winter break on December 22, 1962 at St. James Episcopal Church in Lindsay, CA.  The last half time show before the wedding, Dad’s band played “Get me to the Church on Time.”

Mom and Dad settled in Lindsay with Lindsay High School band becoming the  center of their lives.  Parades, Concerts, Band Reviews, Half Time Shows and one amazing trip with 200 band students to Japan in 1973.  Dad’s band was big, famous and well known in the central valley music community.

He loved his daughters.  One of my fondest memories growing up in Lindsay, was when Dad would wake us up at 6:00 AM to watch the TV Station come on air (remember when we didn’t have 24 hour TV?)  We would all stand at attention, saluting the flag as the station played the National Anthem.    God, Family, Country, and his Music.  These were the many things he was most loyal. 

Dad’s other love was USC, and his Fraternity Sigma Alpha Epsilon.  Dad never tired of his memories of being in the Trojan Marching Band, or the USC Fight Song.  College football was always more fun watching the Trojans with Dad.  Once a Trojan, always a Trojan.  Fight on Daddy!

George had a very dry sense of humor, but it was one of his most amazing qualities.  Every time he had an x-ray, he’d ask the radiologist for an 8 x10 and some wallets.  When riding the jungle cruise at Disneyland, he always had a delayed laugh to the canned jokes.  His grandsons loved his jokes, and enjoyed “wrestling” with him and pretending to be a seal.  George was very deaf, but many would say it was mostly selective hearing.  His delayed response often added to his humor.

George was blessed with four grandchildren; Matthew, Eric, Jack and Jenelle.  He lived long enough to watch Matt and Eric grow into young men, and to see Jack play many sports.  Jenelle is the only granddaughter, and she and Daddy had a special bond of just holding and hugging on each other.

Mom and Dad had 53 years together in marriage.  In 1977 they moved from Lindsay to Visalia where they stayed for the remainder of their years.  They were very active in bible study, book club, and St. Paul’s.  Mom and Dad moved to the Quail Retirement Home two years ago, where he lived until death.  Dad really enjoyed being involved in the Quail Veteran’s day festivities and enjoyed wearing his uniform to dinner.  Mom was the love of his life, and his best friend. I know she will miss him very much.

George has touched so many lives with his gift of music, his guidance counseling and his love for his girls, including Bettye.  He was an amazing gentleman, and we will miss him very much.          

Grief is a strange thing.  It comes at goes and at times catches me when I least expect it.  I do have to say, that because I'm Jenelle's Mom, I've acquired a skill to receive and digest a vast amount of life changing information in a short amount of time.  I think that skill helped me most in the final week of Dad's life. He is at peace now, and suffers no more.  Dad was always great at making Dove calls, and recently a Dove moved into my back yard.  I know he watches over me and my family, and I am who I am because he was my Father.  I am at peace with his passing, and again, I miss him very much.

Here is a link to Obituary I wrote, published on June 2, 2016.

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!