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Preview: Jenelle's Journey

Jenelle's Journey

Updated: 2018-02-02T16:37:45.143-08:00


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 2017Jenelle 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 2017Summer 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 2017Two 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,[...]

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 conjun[...]

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!) Enjoy and HAPPY NEW YEAR![...]

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.[...]

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.  [...]

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 [...]

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!

Back to School!


Jenelle went back to school today, and was very happy to see her friends. Prior to leaving school for her after school program at YMCA, I got an email from her teacher saying she was running a fever of 100.8. I hadn't removed the bandages yet to expose the steri-strips, so I wasn't sure if it was red. Luckily, YMCA reported a normal temperature and it has stayed that way all evening.
Last night, I think we had our first seizure since implanting the VNS. Not sure, because it only lasted 5 seconds. Jenelle eyes adverted to the right, like they usually do at the onset of a complex partial. They stayed in that position for 5 seconds, and then she was back to normal. I hope it was the VNS doing its job.
Thank you all for continued prayers! Ill update later in the week.

Jenelle heading home after surgery!


Positive Scars


Almost 10 years ago, I remember bathing Jenelle the night before surgery and noticing her beautiful, unscarred belly, thinking to myself - tomorrow there will be a a hole here for her Gtube, and she will have a scar. What else will this child have to endure? She was barely 3 years old.
Tomorrow Jenelle will have a new scar on her neck for her Aspire VNS. Please keep her in your thoughts and prayers that the routine surgery goes without incident. Surgery scheduled for 8:30 am, PST

2016 - where should I begin?


I purposely haven't updated because there has been quite a bit going on lately... not really sure where to begin!  Chronologically seems best - here we go~During December, we made the changes to the seizure medications that Dr. Tran had suggested.  Around the 22nd, we decided to add Megace to Jenelle's medications to see if it improved her appetite.  Shortly around Christmas, we began to see a difference - instead of avoiding food completely, Jenelle began to take up to 5 bites of a small meal!  Baby steps! Unfortunately not the appetite we were once used to so we are still dependent on Ensure.In January, Jenelle's medical insurance changed to 100% Medi-cal.  This also meant changing primary care physicians, and Jenelle returned to a doctor we saw two years ago (Dr. Turner) for a physical and to get all of her routine authorizations re-approved (for things like diapers and such.)  At her physical, Jenelle weighed in around 81 pounds - so we are up 10 pounds since the dramatic weight loss!  A good thing for sure!Shortly after Christmas, we received the genetic test results from the "Whole Exome Sequencing" we had tested back in September!  Once again we received normal results; or as written by the genetic nurse, "The testing did not reveal a clear molecular etiology for Jenelle's symptoms."  Normal.  No Answers.Then, the nurse told me, "There was a slight variant of unknown significance in the TPP1 gene.  The doctor has ordered enzymatic testing for the enzyme TPP1 in blood. If that level is normal, then he will have essentially ruled out the condition associated with pathogenic changes in this gene. That condition is known as ceroid lipofuscinosis type 2."  Wow.  Big words.  After reading the e-mail... I immediately went to Dr. Google to search "TPP1" and "ceroid lipofuscinosis" ... the search result was concerning ... "Batten Disease."  In short, an extremely rare and fatal autosomal recessive neurodegenerative disorder that begins in childhood.  Some symptoms sound like Jenelle... some do not.  Regardless, the "fatal" part of this diagnosis is no different than the prognosis we were given for Jenelle at age 18 months.  Just to be overly cautious, the doctor has ordered a blood test of the TPPI enzyme in Jenelle's blood to rule out Batten.  We are fairly confident that most likely Jenelle does not suffer from Batten Disease, but in fact could be a carrier for it should she ever have children.  Interesting.  Anyway, this changes nothing about our amazing little girl.The New Year arrived and we began to see less seizures.  On January 25, we were admitted to CHOC for a week long Video EEG study to see where we were seizure wise with the medication changes, and Dr. Tran was hoping to catch one of Jenelle's newer complex partial seizures (the one where her eyes look like Groucho Marx).  Guess what - we got nothing!  I swear, those EEG probes are the cure!  The good news is that we got to go home two days early (just in time for me to get sick!) and the better news is that Jenelle's Video EEG looked good - better in fact than the two previous EEGs in March 2015 and October 2014!  And yes, no seizures!  Dr. Tran tweaked Jenelle's behavior medications, but kept the seizure medications the same.  She agreed that it was time to seriously discuss a VNS implant!  Something we've been thinking about getting for 5 years or more.  On January 28, we met with neuro surgeon Dr. Olaya at CHOC and he agreed, Jenelle could benefit from a VNS, in particular, the new Aspire VNS implant.So - Vagus Nerve Stimulator - VNS - what is it?  In short, it acts like a pacemaker for the brain.  It monitors the heart rate and elec[...]

Merry Christmas from Jenelle's Family!


Merry Christmas from Jenelle and family!  This is our Christmas Card from this year - enjoy!Front of this year's Christmas Card taken at Kennedy Space CenterEpcot, and Jenelle meeting Tink!As for an update on Jenelle - Jenelle had sedated dental work done at CHOC on November 5 to pull one baby tooth and fill two cavities!  All went well, so we were hoping her appetite would return, but fixing the teeth didn't fix the eating issues.We saw Dr. Idries for a GI follow up in November, and Dr. Tran for a neurology follow up on December 2.  At the GI follow up, Jenelle had gained 6 pounds. With the dental procedure not helping her appetite; Dr. Idries increased her Ensure to 4 cans a day, and thought that maybe Jenelle wasn't eating due to nausea.  (Yes, I scratch my head at that too!  Please tell me my poor child has not been nauseated for 6 months!)  We added anti-nausea medication, but still no change in Jenelle's eating.  It has been frustrating - but we are still not giving up!When we saw Dr. Tran, she thought that maybe Jenelle was still not eating because of the Zarontin.  She also agreed that Jenelle had room to increase Felbamate, and possible go down on Zarontin.  Jenelle is still having many seizures, and now unfortunately is having an increase in "drop" seizures.  Dr. Tran has ordered another Video EEG for the end of January, where we can hopefully change her medications in a safe environment.That is all for now on Jenelle.  Jack has enjoyed his first few months in High School.  He was starting Quarterback for the Freshman Football Team and is now actively playing with the Freshman Basketball Team.  Shortly before Thanksgiving; we went to visit Nana & Poppa George in Visalia.  Nana gave Jack his first driving lesson at the same location where I learned to drive - the Lindsay District Cemetery!  Here are some photos of our visit - Can't believe he gets his permit next year!Nana and Jenelle!JD in the driver's seat!AND, the best news of the year?  Jenelle FINALLY got her new wheelchair!I hope to update more in 2016, and wish you and yours a very happy holiday and a blessed New Year![...]

Start of School & Health Update!


Well, it seems the new school year has arrived, and Jenelle and her Brother Jack have returned as a new 7th Grader, and High School Freshman!  With the new school year, Jenelle has had some routine follow ups along with some worrisome, and rather surprising news...  Miss Jenelle has lost 21 pounds since her last hospital stay in March!  She left CHOC at 91 pounds (50th Percentile for weight) and on August 31, she weighed in at 71 pounds (7th Percentile) during her follow up with Dr. Idries in Gastroenterology.I was absolutely stunned that she has lost that much weight.  I suppose because we see her everyday, it's more difficult to see the weight loss, but that evening during bath, I really took notice at her ribs showing under her skin.  Dr. Idries has prescribed Ensure Plus to be added to her meals and will see her again in 3 months.So, as you can guess, when the body is malnourished... nothing goes well, including seizure control. Luckily, we had a follow up with Dr. Tran two days after Dr. Idries.  Jenelle has been having more cluster seizures than we like to see, but nothing over a minute or more.  She continues to have both Absence, and Complex Partial seizures.  We feel the weight loss could be related to the addition of Zarontin in May, as we immediately noticed a decrease of appetite - however Dr. Tran says that is not a normal side effect for that drug.  She believes that with the 20 pound loss, Jenelle is now being "overdrugged" with seizure meds, which can also lead to more seizures from the body being fatigued.  We both agreed... Jenelle looked very docile and drugged, for lack of better word.Dr. Tran and I discussed a lot of subtle changes for now to give Jenelle more time to gain weight.  The first change being to lower the Onfi (a sedative drug) to see if Jenelle perks up.  We also may want to lower her Risperdone.  I'll need to check with Jenelle's psychiatrist, Dr. Gudapati for that.  For now, we will keep watch, and Dr. Tran will see her again in December.  Dr. Tran also mentioned the possibility of VNS (Vagus Nerve Stimulator).  This was something that was approved at UCLA shortly after our return to CHOC.  We've been with Dr. Tran for a year now, and now that she knows more about Jenelle, she agrees that the VNS is something to consider.  We won't make a decision on that until December.So, for now - lots of protein for Jenelle and hopefully we'll put some weight on our girl! Nutrition is key to everything working well!Oh, and in cleaning out my "piles of stuff" around the house, I found a CD of photos from Give Kids the World with 3 photos we didn't share.  Two photos are of Jenelle's Star in the Castle of Wishes, and one is of our arrival to our cottage. Such fun memories!  Oh, and of course, the traditional first day of school photo!Please pray for some weight gain for our girl.  That is all for now, I'll keep you posted!Jenelle's individual star - Daddy wrote her name on it!Jenelle's star after being "placed" in her constellation.The Curran Family has arrived in Florida! 1st Day of School 2015-2016!Jenelle - Grade 7J.D. - Freshman (Grade 9)[...]

Part 8 - The Last and Final Installment about Jenelle's Make A Wish Trip!


It seems only appropriate to post photos from our last day at Give Kids the World Village on they day they announce their 140,000 Family!  Truly an amazing and wonderful place to stay!On our last day in Florida, we had to check out of our Villa by 11:00 AM, but we were still allowed to hang out on the property until it was time to go to the airport.  While JD and Brett hung out in Amberville playing games, Jenelle and I visited the Village Chapel to spend a few quiet moments together talking with God.All the time, people give us accolades on how we are amazing with Jenelle, and so very strong.  While I appreciate all of the compliments; I feel so very privileged and blessed to be Jenelle's Mom.  Jenelle loves everyone in her family, but it goes without saying that she and I have a special bond with each other. Brett tells me at times, when I leave the house to run to the store, Jenelle will follow me and stand waiting at the garage door after I've left -"Looking for Mommy" as he describes it.  When she manages to get herself out of bed on her own, she makes her way into our room to my side of the bed.  As she gets older, I do the majority of grooming, diaper changes and outfit changes for her.  I was always afraid to have a daughter because I didn't want to endure the usual conflicts all mothers and daughters seem to go through.  And yet, my relationship with Jenelle is so much greater than I ever imagined it.  I can't imagine life without her.None of us live forever.  After my cancer scare, and with Jenelle's short life expectancy - this fact is all too real to me.  Life is short, and you should live each moment to the fullest.  I'm not afraid to lose Jenelle to death, or that I will die first and leave her behind... I know that someday in the after-life, we will be together and we will have many wonderful memories and stories to share.  In this world I am her voice and she is my blessing.  I thank God every day for choosing me to be her mom.In the Village Chapel with Jenelle. The main reason I applied to Make a Wish, was that I wanted to celebrate our unique family and create some memories to last a lifetime for Jack.  In the end, we got that and more.  I know our amazing Wish Trip helped to make Jenelle's relationship with Brett and Jack even stronger.  Just the other day, I mentioned that Jenelle was going to Grandma's for babysitting for the evening because Brett and I were going out.  Jack said, "Mom, you know I'm old enough to watch Jenelle, why can't I babysit tonight?"  I smiled, and was flattered.  After getting to know his sister for a week in Florida, he now understands her better and in small ways really wants to be an important part of her life.  I answered Jack that while it was a wonderful idea for him to babysit - he may not enjoy changing her diaper! ;)  He too is an amazing kid.Love this amazing girl! The trip home was uneventful.  As mentioned, Jenelle's wheelchair was completely broken, so TSA secured it with tape and checked it in.  Jenelle had an escort to the gate in an American Airlines wheelchair.  She was such a big girl and did well waiting for the flight. Jenelle waiting for our flight home.Had to snap a photo of the in flight map as we descended into LAX because it shows my hometown of Visalia!We got home late on Thursday evening - ordered pizza and did lots of laundry. At this point, our journey wasn't quite over as we turned around the next day and drove to Las Vegas (Henderson) for Jack's basketball tournament!  The drive there was easy as we left around noon before the heavy Memorial Day traffic.  Jack's team did OK, a[...]

Part 7 - Castle of Wishes and Magic Kingdom!


Now we've come to probably our biggest update yet which will give all the wonderful details of our last full day in Florida.  We definitely pushed ourselves to make it a memorable day, and most importantly, it was the day to grant Jenelle's wish to meet Tinker Bell!We began the day at the Castle of Wishes at Give Kids the World.  At orientation on our first day, Jenelle was given a golden mirror star (approximately two inches wide).  We were told to visit the Star Fairy at the Castle of Wishes during our stay to have Jenelle's star placed in the GKTW galaxy.  We saved this experience for our last full day, and it was one of the most memorable and emotional experiences of our entire trip.The Castle of Wishes at GKTW has a star on the ceiling for every child that has stayed at GKTW.  Each star has a bar code on back, so they know the name of the child, and galaxy in which is was placed in case it falls off the ceiling.  To date, there are over 130,000 stars on the ceiling in the Castle of Wishes; each star representing a Wish Child.  It was overwhelming to stand and look up at all the stars - an experience I will never quite forget.  It is even more special knowing that one of those stars is for Jenelle and that we can return someday to find it! (The photos really don't do it justice!)Daddy helping Jenelle make a wish.Jenelle giving a hug to our volunteer.Galaxies of stars - each representing a wish child!Looking up at the "Star Tower", this building was added a few years ago so that more stars could be placed in the Castle of Wishes.  The tower is supposed to last 10 years, but given what it looks like today, they may need to soon build a second tower!A close up of a galaxy of stars, each with a Wish Child's name. After our wish experience with the Star Fairy, we arrived at the front lobby to find our wheel chair rental had been delivered!  It was a perfect fit, and I can't thank Amusement Park Rentals enough for helping us out when Jenelle's wheelchair broke!Jenelle's New Ride!If you are ever in Florida - I highly recommend these guys!We had lunch at Chic fil A, and soon we were headed off to the Magic Kingdom! We quickly learned that the only way to arrive at the Main Gate of the Magic Kingdom was by boat, or monorail - after parking of course!  Our first stop was to see Tinker Bell at City Hall. Once again, the Genie Pass allowed us fast pass access and I think even some additional time with Tink.  She was adorable and did not disappoint!  When we explained that she was Jenelle's favorite and we were granting her wish to come meet her in Florida; Tink elaborated and told Jenelle had she had been waiting and hoping she would come!  It was fantastic! Driving in - looks like a popular place to snap a picture!This is a funny photo - at Disneyland, it is a must to snap a photo in front of the train station by the Mickey Mouse face in Flowers.  A must!  We do it every time and even have to wait for a photographer!  Well, not so much in Florida.  They didn't even have a photo pass person at this location, so we asked a Disney information officer to take our photo and he seemed surprised.  I later figured out that Cinderella's castle is the favorite opening photo in Florida.  Go figure!Here is Tinker Bell telling Jenelle all about waiting for her visit!Jenelle was overwhelmed with giggles when we stood her up, and fell into Tink's arms.Big Hugs for Tink!It seems even Tinker Bell didn't want to stop hugging Jenelle!Family photo time with Tink as Jenelle couldn't keep her eyes off her favorite girl.Like everyone said - Magic Kingdom was similar and different to the Disneyland i[...]

Part 6 - Kennedy Space Center!


Well, it seems very appropriate somehow that my update about our visit to Kennedy Space Center lands so close to the 4th of July!  What is more American than a huge giant American Flag on the side of a building that shoots rockets into Space?  On Tuesday, May 19 we spent a day of our Make a Wish Trip visiting the Kennedy Space Center.  Brett was just a baby during the first moon landing, and I was yet born, so seeing this was something new for us all to experience.The weather was really beautiful with no rain forecast until the evening.  Closer to the Atlantic Ocean, it was humid, but cooler.  The drive from Give Kids the World was less than an hour, and we saw lots of wild life along the route.Kennedy Space CenterSo, as you may recall - our day at Universal Studios ended early when Jenelle's wheelchair broke.  I frantically made calls in the area to the local National Seating and Mobility office to no avail.  We decided that we'd simply drive to KSC and rent something with wheels for Jenelle.  Well, even the best of intentions don't always guarantee the best outcome.  Poor Jenelle could only fit into a double stroller as the single stroller was simply too small, and an adult size wheelchair (the only wheelchair available at KSC) was much too big.  She was such a trooper, and with a little help made it through the day.Only option for Jenelle was a double stroller as the adult wheelchair rental was too big.Not fun at all!Our first stop was a quick visit to the Rocket Garden.  I had some optical illusion fun taking photos, and it was interesting to read up on the history of space travel.  After buying tickets for a VIP bus tour, and checking out the garden, we had a quick lunch.Rocket Garden(Objects in Picture are larger in real life)Our VIP tour began at 1:00 PM, and that is when we realized Kennedy Space Center was much larger than we imagined.  The bus was air conditioned and cool, and while the VIP tour allowed us to get out and take photos as specific sites, we think we probably could have had a similar experience on the regular bus tour.We toured various launch sites, viewing areas, the main launching pad, the path where rockets go to the launch site, and the Atlantic Ocean!  We saw an alligator, a manatee, a bald eagle and pelicans!  The final stop of our tour left us at the Apollo museum.  We finished the VIP Tour around 3:00 PM which left a little over an hour to view the Shuttle Atlantis exhibit.  All of the exhibits were amazing and informational! Closing time came quickly at 4:00 PM and we missed the opportunity to ride the 3D Launch Experience. We had a lot of photo opportunities, and got back to the Village early enough to enjoy another evening at Amberville.  Just as we got home, the thunderstorm and rain rolled in.  Brother and Sister viewing the launch sites.Selfie gone wrong.SO much bigger in person!Helping Jenelle walk around.My favorite mission patch.JD in the replica Atlantis Shuttle.Who's flying this thing anyway?I would not buy this helmet for him, but that he could take this photo instead!It was good to have an early evening as the next day was going to be our last full day with a planned visit to the Magic Kingdom.  On my way home, I found a company that rented child size wheelchairs for a minimal cost.  They even delivered to GKTW, so we were all set!That is all for now... Happy 4th of July to you and your family - please be safe!Next update - Magic Kingdom where Jenelle finally meets Tinker Bell! Thank you again to Make A Wish Orange County Inland Empire and GKTW for such an amazing trip![...]

Part 5 - Universal Studios Orlando and Wheelchair Woes!


So after traveling to Florida, adjusting to the heat, and two days at Disney theme parks - our third day we opted for something different - Universal Studios!  In the package of theme park tickets we received from Give Kids the World, we received a 2 Day Park Hopper Pass to Universal Studios Orlando, which has two theme parks - Universal Studios, and Universal's Islands of Adventure.  Both had a portion of their theme park dedicated to the Wizarding World of Harry Potter - so being a Harry Potter buff, I was TOTALLY EXCITED for the day to start!It was a little difficult to get the boys to wake up that morning, and Jenelle was sitting up in bed giggling, so I took the opportunity to meet Disney Characters on site at Give Kids the World.  Our first visit was with Goofy!  I truly believe he is her new favorite!  We met him in the Castle of Wishes and enjoyed the cool air conditioning.Meeting Goofy at Give Kids the World!After spending some photo time with Goofy, we walked over to Julie's Safari Theater to meet Micky Mouse.  On the first day we arrived at GKTW, Jenelle was given a stuffed Mickey Mouse. We brought the toy with us, and Mickey autographed the foot!  Below are some great photos from our time with Mickey - it was special and so very individual because we had all the time in the world.Special time on stage with Mickey Mouse!Mickey autographs Jenelle's stuffed toy.I brought back Breakfast to our villa and found the boys watching TV.  We rallied quickly and hit the road for Universal Studios!  Since it was closing early, we decided to visit the Islands of Adventure park first.  Our first stop was in the Dr. Seuss themed area where we rode rides about the Cat in the Hat, the Sneetches and Red Fish, Blue Fish.  It was pretty hot with no rain in the forecast (I actually think the days with rain were hotter than days without) so before entering Hogsmeade (the Harry Potter Themed village), we stopped to hydrate!JD chilling after some Dr. Suess rides!Sweet Jenelle enjoying a cool down with a shoe photo bomb by JD.Soon we arrived at Hogsmeade, and this is where JD discovered faster rides than Disneyland!  Just like the Genie Pass with Disney, we had a "Golden Pass" at Universal which worked the same way in allowing us access onto fast pass rides regardless of the time.  The first ride in Hogsmeade was the Dragon Challenge which is a high speed hanging roller coaster with two tracks that intertwine!  JD and I rode the "smoother" track and immediately fell in love with the thrills!  Brett, who sometimes doesn't do well on rides - depending on the ride - rode a second time with JD and even he enjoyed it.Just outside the Dragon Challenge, I found the Three Broomsticks (which is a restaurant/pub in the book.)  I had to take a photo throwing my "delta" sign (for Tri Delta) in honor of the Delta that hangs above the entrance.  JD thought I was nuts, but took a photo for me anyway.  Once a Tri Delta, always a Tri Delta!Delta Sighting with Delta Love!After the Dragon Challenge, we walked to Hogwarts and learned that there was a ride inside the castle.  The ride was called "Harry Potter and the Forbidden Journey" and it was absolutely JD's most favorite ride of the trip.  It was a lot like Star Tours, but in 3D and much more jolting.  Brett was OK riding once, and even I felt a little dizzy after getting off the ride. Looking up at Hogwarts CastleWhile I wanted to walk back and take the Hogwarts Express to the second park and Diagon Alley - the boys wanted to continue through the Islands of Adventure park into Jurassic Park and[...]

Part 4 - Disney's Animal Kingdom & Hollywood Studios!


Part 4 - Journey to Disney's Animal Kingdom and Disney's Hollywood Studios (two separate theme parks for those unfamiliar with Disney World.)So, we began our second full day in Orlando a little earlier than the first and hit the road around 9:00 AM.  The agenda for the day was Disney's Animal Kingdom, and Disney's Hollywood Studios.  We had dinner reservations at Hollywood Studios for the Sci Fi Drive In Theater that night, so we parked in the Hollywood Studios lot and took a bus to Animal Kingdom first.  I was mistaken and thought all the parks were on the monorail line, but quickly learned that was not the case. We waited in a short and humid rain storm for the bus and eventually arrived at Animal Kingdom around 10:00 AM.  The morning rain and humidity made the heat all the more unbearable for that day.Riding the bus from the Hollywood Studios parking to Animal KingdomFamily photo spot at Animal KingdomAnimal Kingdom was beautiful, but crowded.  The heat did not make it much better.  Our first ride was the Kilimanjaro Safari.  We were amazed at how close we came to many animals, including a Rhino that appeared to be charging our vehicle, but really just wanted us to move on so he could cross the road.  We saw elephants, giraffe, alligators, rhinos, lions and many other animals not see in your average zoo.  It was amazing.This Rhino came within inches of our truckCan you spot the Giraffe?After the Safari, we walked to the Festival of the Lion King theater and found that we didn't have long to wait for the next show.  This is another time that the "Genie Pass" really helped us out.  We were directed into a sheltered waiting area before the show, where we sat through another down pour of rain.  This was exciting because everyone says it rains every day in Florida, and of course, as Californians, we don't see much rain!  Once the theater opened, we were directed to reserved front row seats for the show.  It was awesome and really involved much of the audience.   Jenelle and Daddy waiting for the rain to stop before the Festival of the Lion King ShowAfter the Lion King show, we made our way back to the bus and onto Hollywood Studios.  Although we maybe spent about 4 hours at Animal Kingdom, the wet walkways and humidity were just too much for us.  Jenelle doesn't really see a lot on rides like the safari, so we thought we'd move on.Next stop, Disney's Hollywood Studios, where the resort was celebrating Star Wars Weekend!  Hollywood Studios had lots of similarities to Disney's California Adventure park with many fast moving rides!  We enjoyed the Toy Story Midway Mania ride, that was similar to the one at home, Star Tours which was somewhat different, and we ventured through new rides like the The Great Movie Ride and the Aerosmith Rock N Roller Coaster. JD and I had so much fun on the Rock N Roller Coaster, we rode it twice!  To my surprise, we were told this coaster was like California Screaming, but there was one HUGE difference - the Rock N Roller Coaster was indoors!  It was a blast as you can see in the photos below.Back when JD was 6 years old, and just above the height limit, I forced him to ride Tower of Terror with our visiting friend Dr. Danielle.  He was so scared I thought we were going to have to stop the ride!  JD has never wanted to venture on that ride since... until Brett talked him into it in Florida.  So Brett and JD had the pleasure of riding Tower of Terror, which JD thought was tamer than the version in California (or maybe the imagination and fear of a 6 [...]

Part 3 - Epcot!


 WAKE UP! WE ARE GOING TO EPCOT AT DISNEY WORLD!So, our first full day in Florida started slowly.  Brett and I were up at a decent time, but the kids just would not wake up... JD sleeping with Violet!Jenelle snoozing away!After around 10:30, we finally began jumping on their beds to get them to wake. "We're going to Disney World! We're going to Disney World! WAKE UP!"  JD didn't think it was funny, but Jenelle giggled.  Soon after getting the kids ready, we had a lazy brunch-lunch at the Village, and made our way to Epcot around 12:30.We're here - Hello Epcot!Hey, I hear Tinker Bell? Where is she?With our 3 Day Park Hopper Passes, GKTW and Disney also provided us with the most amazing, most exclusive VIP pass ever... the Genie Pass!  This is a new program for Disney World in that the bearer of a Genie Pass has VIP privileges including free parking, free stroller/wheelchair rental, and immediate access to all rides, shows and character ques via Fast Past ques (regardless of the time of day.)  A Genie Pass can only be obtained from a "wish granting" organization, thus replacing the disability pass that was being misused and has now been retired.  We had no idea the power of the Genie Pass until we approached our first ride at Epcot.  Our first ride was the Voyage through the History of Technology.  We entered the fast pass Que behind a family of 18 individuals with a regular fast pass and "Grandma in a wheelchair."  Once the attendant saw our "Genie Pass", we were moved in front of what I called a "hot mess" (the family of 18) and put on the ride immediately.  Not to say this family wasn't deserving of special assistance; it's just that they were large in number with kids running around and seemingly very unorganized.  Bluntly, this group was a hot mess and we decided to go in the opposite direction of whatever ride they went to next!After that experience - "All Hail the Genie Pass!" and Brett kept it on his person and on display at all times! Genie Pass!  We love you Genie Pass!Epcot was very different of course, and it took a while to figure out our bearings.  We really enjoyed the many unique rides in Epcot near the "golf ball" and found some to be better than rides at Disneyland.  It was hot and humid, and our first full day of experiencing the humidity... so we were uncomfortable to say the least.  JD enjoyed the Test Track ride and Mission to Mars, we also enjoyed cooling down in the aquarium area learning about Manatees and Dolphins.Riding the Chevy Test Track - better than California Adventure's Carsland Ride (faster too!)During the trip, JD grew taller than me!Feeling sentimental seeing the beautiful sights of our home state of California!So, after venturing on the rides around the Epcot globe, we decided to journey into the "World Showcase" area.  Prior to our trip, I made reservations for dinner in Japan at Teppan Edo Steakhouse, so we wanted to get an idea of where to go later that evening.  While we were told by many how amazing Epcot was, we were not as impressed to be completely honest.  Perhaps it was because it was a Saturday, or because it was also "Star Wars Weekend"; but we found the World Showcase to be crowded and full of "groups drinking around the world."  Not so fun when you don't know where you are going, your overly hot, and pushing a child in a wheelchair through crowds.We decided to stop in Mexico to have lunch and to take an opportunity to cool down Jenelle.  Using her mic-key button, we quickly hydrated her with many ounces via [...]

Part 2 - The Journey to Florida!


Up, up and away we go!Jenelle's first flight on an airplane!Window seat for her first plane ride!Family is ready to fly!Part 2 of Jenelle's Wish Trip:So yes, we have never flown with Jenelle on a plane.  I must admit, I was a bit nervous - especially when Jenelle's neurologist provided us with a letter for TSA stating that "in the event of a seizure emergency during flight, the plane should continue onto it's designation (i.e. not make an emergency landing) as parents are will monitor patient after Diastat is given."  Actually, getting through TSA was pretty easy as they allowed us extra time given Jenelle was in a wheelchair. Jenelle did really well on the plane and we were fortunate to have a non-stop flight.  The only glitch ... changing a diaper in mid-air in the lavatory!  Well, call me flexible, but when Jenelle's diaper leaked, I couldn't leave her in wet pants (especially with a stranger sitting next to us) so I changed her diaper and clothes in the itty bitty airplane lavatory.  She was a champ and giggled the whole time.Jenelle enjoyed sleeping with her head on my lap, and was really calm during our flight.  As we started to descend for the landing, she fussed a bit probably because of the ear pressure, but was a real champ.  Once we arrived in Orlando, we were met by a volunteer greeter from Give Kids the World - the special village that would become our home for the next 7 days!  Unbeknown to us, a second "Make a Wish" family from Hawaii was on our flight (instead of leaving home at 5AM like we did, they left Hawaii at midnight!)  They had two adorable young boys who faired well on their very, very long flight.  We had the same greeter who helped us get our luggage and help get us situated with our rental car.Jenelle being greeted like a celebrity!After locating our rental car, we were on our way to Give Kids the World Village.  GKTW is a non-profit, 70 acre (and expanding) storybook village located in Central Florida within minutes of all the theme parks and only available to families via wish granting organizations.  I encourage you to check out the website about the founder Henri Landwrith, and this amazing volunteer organization.  Our experience echos many - we were treated like family and the experience of staying at GKTW was a once in a lifetime adventure for all of us!Jenelle and JD in the lobby.When we checked in, we were treated like celebrities once again.  Our friends in Colorado - Randy, Linda and Holly Vose, made sure we received welcome gifts courtesy of Boston Market!  (Randy works for Boston Market corporate, and they handle all the food at GKTW village.)  Upon arrival, we were met the chef who gave us a box of freshly made gingerbread cookies and a Cinderella Gift Basket for Jenelle!  Jenelle also received a Mickey Mouse doll from the volunteers, and JD got a Shamu whale, which he named "Donkey" because the donkey from Shrek was on the ceiling looking down at us! ;)Meeting the Boston Market head chef - thank you Vose Family!Daddy & JD are very excited for cookies!We lost 3 hours on our trip to Orlando, so after checking in we arrived at our cottage around 7:00 PM.  I quickly attended a parent orientation where we were given information and tickets to the local amusement parks and meal times at the village.  Our cottage had two bedrooms, two bathrooms, washer & dryer, a jacuzzi tub, a living room area with small kitchen and dining area.  All the amenities of home!  View from our cottage.JD [...]

Jenelle's Wish Granted! - (Part 1 of our Make A Wish Adventure!)


Some of you may not know that the Make a Wish Foundation is not just to grant "last minute wishes of dying children"... on the contrary, that dynamic makes up only 10% of wishes granted by this incredible organization.  Any child may qualify for Make a Wish if that child suffers from a life-threatening medical condition who has reached the age of 2 1/2 and is younger than 18 at the time of referral. Obviously, Jenelle qualifies.Late last summer, I referred Jenelle to our local Make A Wish Foundation office for Orange County and the Inland Empire.  After completing an application, Make a Wish conferred with Jenelle's doctor, and asked for more information about our family; eventually, Jenelle's referral was accepted! I must admit, I was apprehensive at first. I was like most people, and felt Make A Wish was a charity for dying children, and while Jenelle's prognosis is unknown, we have been told to expect a shorter life expectancy.  Mutual special needs Moms who had been on the receiving end of the wish granting part of this organization encouraged me to apply, so once I realized Jack was about to start High School and soon be gone to college, and that Jenelle was growing up as well, and that with all the ups and downs in our lives the past 11 years - time was running out for a truly unique experience like this. Jenelle qualified, and her wish was just as deserving as any other child in a similar circumstance.  Once the wish process began, my apprehension and guilt immediately melted away.Because Jenelle is non-verbal, the process involved an interview with the family to determine Jenelle's true wish.  In early February, the family had a sit down meeting with Jenelle's "Wish Team" to answer questions about our life - what Jenelle liked, what she needed, what we wanted to see for her, what we wanted a as a family, etc.  I was moved to tears at one point discussing possible "wishes" for Jenelle.  Eventually, after our discussion, we narrowed it down to two possible wishes - a Tobii device to give Jenelle a voice (so Brett could finally hear her say "Daddy"), or a trip to Disney World for a true family vacation and for Jenelle to meet her favorite Disney Character - Tinkerbell.  After discussing the pros and cons of the Tobii Device with her educators (i.e. - will it work for her, what if there are glitches, etc.), the family decided on the vacation.  Shortly after making the decision, it was March and Jenelle had her 15 day stay at CHOC.  During that stay, in the back of my mind, I knew the timing was right for this trip.  Her increased seizures in March reminded me how very fragile she really is, and how our time with her is so very precious.After lots of planning with school testing schedules, vacation schedules at work, etc. - on May 13, 2015 - Jenelle's "Wish Team" held a pizza party at our home to present Jenelle with her Wish, and the Itinerary for our trip.  *Two days later, we were riding in a limousine to LAX for our flight to Orlando, Florida!  For seven amazing days we were treated like VIPs; we laughed together, rode amusement park rides, saw shows, took photos, got lost, ate amazing food, had ice cream for breakfast, stayed up late, slept in, got on each other's nerves, and for once had a true family vacation!  The trip was so amazing, I wouldn't do it justice to update it all here, so I will give you multiple updates for each amazing day (with photos!)We don't know how we will ever be able to thank the Make A Wish Foundation (and Gi[...]

Follow Up with Dr. Tran, and "Mommy's Faulty Genes!"


Last Friday, Jenelle had her first follow up with Dr. Tran since her lengthy hospitalizations last month.  Since coming off Depakote, and starting Zarontin, Jenelle's seizures are much more stable.  At first, we would go days without seeing any of her absence seizures.  Now, we are seeing more daily seizures, but nothing like the 25 minute seizures we had last month.  She seems more alert as well, although weak in some areas.  Dr. Tran agreed that Jenelle was doing well. While we'd like to eventually increase Zarontin, and decrease Felbatol, we are on hold for the moment as we have a lot of exciting events happening for the family in May. The plan for now is to keep the meds the same until the end of school, then make some slight changes in the summer and follow up again with Dr. Tran in October.  (And of course, stay out of the hospital!)During her two hospital stays in March, Jenelle had some genetic tests done.  Just to refresh your memory, when she was younger, Brett and I agreed to get as much genetic testing done as long as it was 1) not evasive to Jenelle, 2) covered by insurance, and 3) only if it would help provide some answers for Jack should he want to have children of his own some day.  If you remember when we saw Dr. Menkes (the pediatric neurology version of Dr. House), he said we would never know, but that shouldn't discourage us from testing every few years as science is always advancing.  So, during Jenelle's last hospital stay, we met with metabolics and agreed to run two tests - one which was a test to determine if Jenelle could tolerate Depakote, and the other a more extensive genetic panel of known genetic causes of Epilepsy through a company called Gene DX.  Luckily, both were covered in full by insurance, and it was a simple blood test.So, during the rest of our follow up with Dr. Tran last Friday, we discussed the "unexpected" genetic findings on one of Jenelle's tests last month.  Yes, that's right... in 12+ years of testing, we finally found an abnormality in Jenelle's DNA.   Bear with me... In the Polymerase Gamma (POLG) Gene Sequencing, Jenelle has a substitution of Exon 23 of the POLG1 gene (apparently she has a "T" and it is supposed to end in "G" (or vice versa).  What this abnormality means, is that Jenelle cannot metabolize valporic acid i.e. Depakote.  Not that we didn't already know that after her second hospitalization when her ammonia levels were off the charts! ;)  We also learned that this "abnormality" was due to a spontaneous gene mutation... therefore it is very unlikely that Jack will pass it along to his children.So, let me stress once again... the news of this abnormality is very, very insignificant.  It literally tells us nothing new.  However, in the 12+ years of hearing that her genetic results were normal or inconclusive - this "abnormal" finding had us laughing and joking with Dr. Tran.  Finally, we have written proof that there is something "abnormal" about Jenelle's DNA. So, who's to blame?  My DNA or Brett's?  Accordingly, the POLG gene is found in the Mitochondria... and apparently you get your Mitochondria from your Mother's DNA.  So... Brett is relieved to finally have some slight evidence that it's all my fault! :) While I can't stress enough how insignificant this is... I can tell you it makes us a tiny bit hopeful to see if we get more information from the Epilepsy Panel being done with Gene DX.  Another interesting tw[...]

Jenelle's Guide on How to Meet Lots of Cute Firemen in 10 Days!


Where did March go?  I think it takes at least a week to fully recover and recollect your thoughts when your child has been in and out of the hospital like Jenelle has been.  Finally, I think it's safe (knock on wood) to say she is back to normal, and life is getting back to normal too.  So where were we on the update?After the doctors figured out the issue with Depakote and her ammonia levels, it took a couple more days, and a final big poop, for Jenelle's ammonia levels to return to normal and for us to start seeing our usual giggly, happy Jenelle.  We started a new seizure medication called Zaronton, and for now I think it is helping. On Tuesday March 17, Jenelle had a 9 minute absence seizure in the hospital while hooked up to a monitor for her heart rate and oxygen levels.  While seizing, Jenelle maintained a 100% pulse oxygen level, and a very good heart beat.  The only time her oxygen level started to de-stat was after the nurses provided Ativan which stopped the seizure.  While I really don't like her having these long absence seizures, I am grateful that I witnessed a long one while being reassured that her oxygen and heart rate was fine. Once Jenelle's ammonia levels were normal, the doctors were ready to discharge Jenelle - however, she was still lethargic, constipated, and not herself, so Brett and I objected.  We wanted a plan for the seizures because we were tired of calling 911.  On Friday, we met with Dr. Tran and General Neuro and we agreed to send Jenelle home on Onfi, a lowered dose of Felbatol (to help with sleep), and Zaronton.  Dr. Tran says she may want to "flirt" with Depakote again down the road, but Brett and I are not convinced.  It's obvious Jenelle gets very sick on this drug, and while you can take levo-carnatine to help counter act the metabolic issues, I'm not sold. Our new Seizure Action Plan is that we do not need to administer Diastat for an Absence seizure until it goes longer than 15 minutes. Scary thought, but like I said, she was OK, and absence seizures are not as violent as say a grand mal. Yes, even I can find optimism and a silver lining in a 9 minute seizure! ;)So, you know how it goes with hospital discharge...  They tell you that you are going home at 10:00 AM, but really you leave 5 hours later.  Jack was really missing his sister, as were Aunt Nicki, Grandma & Grandpa, so we left the hospital and met everyone for a late lunch at Cafe Rio around 3:30.  Brett and I went into get food and left Jenelle with everyone outside.  Just as we sat down, Jenelle started seizing again. Dr. Tran had increased Jenelle's Diastat from 10ml to 12.5 ml and I didn't have the new prescription yet.  We were literally across the street from the fire station, so I choose to not give the small dose of Diastat, and call 911 after 9 minutes.  (We didn't know about the 15 minute seizure plan yet)  Wouldn't you know, the ambulance got lost driving across the street!  So paramedics arrived later than expected and gave Jenelle Versed at 16 minutes. She came around, and off we went back to CHOC ER. It was truly surreal and unbelievable.Thankfully, at the ER Jenelle was back to her normal self.  They really didn't take any tests or treat her.  The Neuro Department told the ER staff that they were comfortable sending Jenelle home and to give her more time on the new medication.  Zaronton is different and it does not need a "loading [...]

Shades of 2005 All Over Again!


In 2005, Jenelle had 15 trips to the ER, and 7 hospital stays.  2015 is trying to compete with that... but hopefully we got an answer this afternoon.... but first, let me catch you up since my last update on Tuesday.Jenelle made it to school on Wednesday and while sluggish, she had a good day.  Approximately 7 seizures were seen throughout the day.  On Thursday, she had another good day at school, but increased seizures - almost 15 total until approximately 7:45 p.m. when she had another 15 minute absence seizure requiring Diastat.  After administration of the Diastat, it took another 10 minute for the seizure to stop... just as paramedics had arrived.  Erring on the side of caution, we took her to CHOC ER as Diastat is short lived in the system and I didn't want to be calling paramedics again. Jenelle seemed fine at the ER and her Depakote (the new drug) levels were good.  Neuro advised to give her another "loading dose" of Depakote, and send her home with an increased dose for the next few days.  We got home by 1:30 am and kept Jenelle home from school the next day to let her sleep. She was pretty groggy and sluggish on Friday, but still responsive.  Saturday morning, we kept her home from baseball, and she slept the entire day barely waking to eat.  The good news was no seizures, but we were worried because it wasn't normal behavior.On Sunday, I woke her at 10:00 and made her eat.  She was very sluggish in her eating.  After breakfast, I sat her down in the living room to play.  An hour later, she was having another absence seizure... immediately I began timing it, gave Diastat at 6 minutes and called 911.  She came out of the seizure after 14 minutes and just as paramedics arrived.  She was very non-responsive, so we took her to CHOC ER where we were admitted again within the hour.Thursday's ER visit really hit us hard emotionally.  Remembering all too well the times we were in and out of the ER and this hospital... and of course the unknown diagnosis weighs heavy.  We were always told to appreciate what she is today, but that eventually she would plateau and regress.  Is this the start of the regression?  The all too familiar worry in the back of the mind? We hope not, but we're not fond of this new guessing game.So upon admission Sunday night, the plan was to let her rest and meet with General Peds doctors and Neuro team.  Oh yes, and poop... poor thing hadn't pooped since her last BM on Tuesday, so we decided to help things along with another enema.  And boy, did she poop ... and then she was asleep.  I let the nurse know that we were concerned that Jenelle was either in Status, or possibly that she had a bowel obstruction. We really wanted more tests, and the nurse agreed the constipation was concerning. Around midnight, I heard vomiting.   I ran to Jenelle's bedside and she was face down in her own vomit still asleep.  Thankfully the nurse was there within seconds and we had a midnight shower to clean her up.  The vomiting without fever was concerning and was another possible symptom of obstruction.  They gave her Zofran and she made it through the night without another vomiting episode.That morning, the general peds doctors decided to run some tests, including a test for ammonia levels.  Her Felbatol levels and Depakote levels were good, so something else was happening.  Later Dr. Tran sto[...]

25 Minute Seizure Leads to Hospital Admission and New Drugs


On Saturday, March 7, Jenelle had a really great morning.  She did well in her Challenger baseball game, was alert and had great balance.  Big brother JD had a basketball tournament locally that started around 1:00 p.m. - when we got home from Little League, the weather was heating up.  I decided to skip JD's basketball game and stay home with Jenelle to keep her out of the heat, and out of the noisy basketball gym.  As it turned out, it was a smart decision on my part.After feeding Jenelle lunch, she was quiet and indicating signs of wanting a nap.  I put her down to play in the living room with her toys while I relaxed with some music hoping to drift into a nap myself.  I soon noticed that Jenelle was having one of her usual seizures with the funny eye brow movements.  These usually stopped after 30 to 40 seconds.  As I watched, and realized she hadn't stopped.  One song ended, another started and still no end to the seizure.  As we approached the end of the second song (so approximately 7-8 minutes) I ran to get her Diastat.  As I sat next to her, she was still seizing, so I administered the Diastat.  Being alone, and this being an unusual length for this type of seizure, I called 911.  Unlike normal, the seizure did not stop after the Diastat.  The operator was calm and sent paramedics.  I ran to open and leave the front door open so the paramedics could walk in; and returned where Jenelle was still seizing.Paramedics arrived very quickly - I'd say within 5 minutes or less.  The walked in and called for us and soon were by Jenelle's side administering oxygen and taking vitals.  Unlike our last encounter with the paramedics, they recognized her twitching eyes and acknowledged that she was still seizing.  At this time we were close to 20 minutes.  After a few minutes of taking vitals and getting her history, the paramedics decided to administer Versed.  The last time she got this injection, she immediately snapped out of the seizure.  This time, it took another 3-4 minutes before she finally came out of the seizure after the injection of Versed.  I had quickly packed my purse with my phone charger and Kindle, and soon we were en route to Children's Hospital OC emergency department.Jenelle remained groggy for quite a while at the ER, where we decided to get blood work to check for illness given she had diarrhea just a few days before.  I explained how we were working with Dr. Tran to rule things out like insomnia, so they contacted Dr. Tran after obtaining normal blood results for her recommendation.  Within an hour, we were being admitted.  I would have been comfortable taking her home, but this guessing game needed to find a conclusion, so the admission was a great idea too.Our first night, they ran a urine culture to rule out UTI and mostly left Jenelle alone as she was recovering from Diastat and Versed.  It was a rough night and she woke a couple of times.  The urine was normal.  The next morning was not an easy wake given the new Daylight Saving time change. After breakfast, Jenelle was quickly put on a video EEG so we could hopefully capture the funny eye brow seizures.  Dr. Tran believed they could be complex partial seizures.  Of course, now that she was on the EEG monitor, and after the heavy medications the day before - no seizures.  T[...]

Sometimes I get quiet...


And sometimes I don't update because I simply don't know what to say...  where to begin?

We seemed to have sailed smoothly though the holidays only to find ourselves with increased seizures, worsening behavior and no answers.  Last Thursday was the first call in many months from school to come get Jenelle because of seizures.  Not a long lasting grand mal, so we escaped Diastat and an ambulance ride... but clustering complex partial seizures (our new "Groucho Marx" seizure) that left Jenelle not exactly herself so the school nurse was concerned - rightfully so.  Just as we finally get to the dose of Felbatol we were shooting for.  One step forward, two steps back.

And on top of the seizures, Jenelle's bad behavioral habits have returned.  She is scratching herself, pulling her hair out, rolling her fingers in her hair until they get caught - then having to cut her hair from her finger to get the circulation to return.  She soothes herself with a rhythmic coo.. and when that isn't enough to soothe her, she bangs her head with her fist or on the floor.  When lying on the floor she scoots and arches her back and neck (and to see it in person, you'd think she was going to snap her neck!)  The other day this caused a large rug burn on the back of her neck - something to watch to make sure it doesn't take long to heal and get infected.  God I wish she could just tell us what it is.

Dr. Tran is not oblivious and is very much in the loop.  We have to rule things out like lack of sleep (which would cause an increase in seizures), and the possibility that the Felbatol dose is too high.  Little changes with not much difference.  It could be hormones, and the onset of menses (which still hasn't started, thankfully.)  Illness... which is a strong possibility at this point as Jenelle suffered much this weekend with diarrhea.  Imagine your 12 year old diapered child with the runs... not fun in any way.  After Saturday's "poopy day" Jenelle was fine the rest of the weekend so I sent her to school, only to have to pick her up from school again today for another runny diaper.  Right now it is 10:45 p.m. and I've been snuggling with her feeling her twitch and jerk and toss and turn trying to fall asleep.  We listen to music to no avail.  No rest for the princess - but tomorrow will be a day at home until 24 hours have passed from her last runny BM (joy!)

I'm worried... the subtle changes in her like this... the regression scares me.  If Felbatol means she will be pulling her hair out, then no thank you.  That is a side effect I never missed.  Is she in pain?  Possibly.  Last Thursday, I gave her in Tylenol, just in case it was a headache... but did it help I'm not sure.

Sometimes, things change so quickly I don't know where to begin.  Sometimes, there are more questions than answers.  This isn't my first dance, so I know it takes time - I just wish she could tell us what it is.  And I'm worried.

Thank you always for your thoughts and prayers - please keep them coming and pray things settle down soon.  I'll keep you posted.