Dying battery and a loose screw

 The year has been going great and Jenelle continues to do well with the RNS (Responsive Neuro Stimulator) settings. We've been keeping the settings "as is" mostly and were seeing great results until our follow up appointment in June.  Prior to that appointment, we were seeing a bit of an increase in tonic clonic seizures (grand mal).  Turns out that Jenelle's VNS (Vagus Nerve Stimulator) battery was at 15%, thus requiring us to see our favorite Neurosurgeon, Dr. Olaya, again to schedule outpatient surgery to change the VNS battery.  

We were able to schedule pretty quickly, and Jenelle had outpatient surgery on July 28.  On the day of surgery, they could barely get the VNS to register on the monitoring device so they could capture her settings.  Turns out it was almost completely dead at 4%.  The surgery went well, and Jenelle went 6 days seizure free after the surgery.  We are back to seeing infrequent drops and tonic clonics, but much improved from what we were seeing the weeks prior to surgery.

Another funny that happened during our "pre-op" visit with Dr. Olaya.  I had noticed a small "bump" on Jenelle's head near her RNS incision.  Dr. Olaya checked it out and said, "It's likely a loose screw, did she fall recently?"  Well yes, Jenelle has hit her head a couple of times in a fall.  Dr. Olaya believes that Jenelle may have dislodged one of the screws to her RNS implant, and said that the only way to fix it is to wait and see if it starts to poke through the skin or if it starts to bother her.  Rather than plan a separate surgery, we decided to just watch it for now.  We could not stop laughing.  I asked if it was a "Phillips" or a "Flathead," and Brett asked if we should try to fix it at home (ouch.)  We both thought it was hysterical that Jenelle, literally, has a screw loose.

We are still in the process of switching to a Self Determination Program with Regional Center for Jenelle's day program.  She seem very content at home and we're doing our best to keep her outings frequent and social.  Speaking of which, Jenelle's baseball Challenger team had an incredible opportunity to play at game at the Little League Western Region ballpark in San Bernardino with the All Stars from all over the western United States as the buddies.  Fun was had by all, and she now has bragging rights that her brother JD and cousin Trevor never had - that she played ball at Western Region in San Bernardino!  (Technically, JD went to Western Region for the Intermediate Division, but that was in Nogales, not San Bernardino.)  Grandma and Grandpa were very proud.

So now as summer is coming to a close, we are watching everyone else go back to school including JD who moved to San Diego to start law school at California Western School of Law.  Jack is living in downtown and is 5 blocks from Petco.  Heaven forbid he becomes a Padres fan!

Here are some photos to share from our summer.  Thank you for continued prayers - I will try to update again when I can.

Mom, Jenelle, Jack, Grandma and Dad in San Bernardino

Jenelle and Daddy at Home Plate

Jenelle living her best life at the park.

Finally, Better Days...

 

Happy New Year!  I apologize that this update is long overdue, but it has some very, very good news.

 At our last update on September 11, 2024, we had a major tweak to the RNS device as we jumped  from a .5 to a 1.5 and we started to see a difference in Jenelle's seizures.  A small difference, but some improvement.  We were still seeing frequent (maybe every third day tonic/clonic seizures (grand mal) and a lot of head drops.  Some of the increased seizure activity was due to illness.  

On Saturday morning of October 19, we had a scary 25-minute tonic/clonic (grand mal) that got Jenelle an ambulance ride to CHOC where she was diagnosed with a UTI.  On a strange, quirky note that "only epilepsy parents can understand" kind of vibe ... we were very out of practice for how to react to this seizure emergency - which means she's been doing well for a while.  I didn't have her rescue medication anywhere near her (or within reach) at the time (she was eating breakfast).  I didn't even start to time her seizure until well past 5 minutes.  I didn't even give her rescue medication (Nysalym) until well after she had been seizing for 15 minutes, which didn't stop her seizure before paramedics arrived 5 minutes later.  Thankfully, the UTI explained the unusually long seizure, and the doctor was able to capture the information from the RNS.  And again, not having been in the practice of using emergency medication, or calling 911 is a very good thing when your child has epilepsy.

 At our next RNS appointment on November 6, the team made another slight adjustment.  And since that adjustment, Jenelle has been an entirely different person.  She is more alert.  More vocal. Happier. Calmer. And is having way, way fewer seizures.  I was keeping tabs with her 1:1 aide at school, our home nurse, and the family, and we all noticed that we had not been using her magnet as much as we used to.  In fact, we estimated that we were seeing weekly tonic/clonic (grand mal) seizures, and head drop seizures every few days.  And we all agreed we were seeing the difference in her behavior and stamina.

Our next RNS Appointment with the RNS team confirmed that we were seeing significant seizure improvement.  So significant that we decided not to make any changes, and keep things the same for two more months.  If things remain the same, we may start weaning medications.  To confirm what we've been seeing, I got to take the following photo of the data the doctor is seeing:

The "Activity" section in the photo above represents the first day Jenelle's RNS was turned on (the far left of the graph) to February 5, 2025 (the far right of the graph.)  The  black lines that you see represent "captured seizures" i.e. seizures that we've marked.  As you can see, as you get closer to the right, you see the "significant" change made in August/November and the obvious seizure improvement.  Pretty cool huh?  Seeing is believing.  It wasn't easy, but I think we are finally seeing significant seizure control, as well as the best quality of life for our girl.

Compared to 2023, our 2024 was a much better year for all of us. As mentioned in the last update, Jenelle aged out of the Adult Transition Program at Tustin Unified School District and her last day was December 20.  The next placement is still undecided as she is on the waiting list for 2 adult day care programs - which means Jenelle is at home full time, which means she needs full time care.  

To complicate the need for that care, Brett works full time at home, and still coaches baseball in Mission Viejo, and I started a new "full time" job in September which requires me to be out of the house from 8am to 6pm.  I now work for the City of Anaheim in the City Attorney's office and as a government employee I am working an 9/80 schedule which gives me every other Friday off.  That extra Friday off has helped in that I've mostly moved all of Jenelle's various appointments to that day.  While we wait for an adult program, Regional Center has increase our home nursing hours so Brett is able to continue to work from home without interruption.  So far, it is working.  Jenelle is content and happy at home, and we make a lot of extra effort to get Jenelle out in the community.  It takes creativity, and a village.

So that is the latest update for now.  For any parent or person with epilepsy considering the RNS... Brett and I would tell you, it is not and easy fix.  We are still half-way to perfect, and went through a lot to get here.  Be ready for a long, long journey... and don't give up easily.

Thank you for continued prayers - I'll continue to keep you posted!