Friday, March 22, 2024

And a Happy New Year 2024 and finally an update!

Well, we are well into the new year, and it already feels like it was a blur. The good news is that Jenelle is back to baseline - behavior wise and pain wise.  Unfortunately, we are still seeing a lot of seizures.

At our last follow up in late January, Dr. Steenari adjusted the programing for Jenelle's RNS device slightly.  And when we say slightly, think of a scale of 1 to 10 - we adjusted the settings/programing at a .25.  This process is going to be a marathon, not a race becauase the RNS is very different from the VNS.

 The VNS is set to automatically send electronic stimulation every 40 seconds, and will activate when it senses an increase in heart rate. The RNS device only records seizure activity/brain waves, and will only send electronic stimulation when it recognizes a brain wave that it has been programed to treat.  The manufacturer recommends taking extremely slow steps (i.e. small changes) on the programing of the RNS so as not to "miss" what could be the optimal setting.  While Lennox Gastaut is a different type of Epilepsy, we believe this process will be quicker than it is for a patient with typical epilepsy because a patient with LGS (like Jenelle) has more frequent seizures.  A typical patient with epilepsy may have only 1 seizure every month, whereas Jenelle has at least 3 a day.  

Given that Jenelle is doing well after the implant surgery, but still having lots of seizures, we decided to increase Jenelle's Felbamate to see if that would help.  Unfortunately, we are not seeing much improvment, so that will be something to discuss at our next appointment on April 3.

Jenelle recently got a cute pixie hair cut that I absolutely adore.  Her hair is growing fast, and as mentioned at the beginning of this post, she is back to baseline which makes the entire household calmer.  

In mid February, we were notified by Jenelle's School District that she and another student would be moving to a new class at the Adult Continuation School campus located at Hillview High School.  This change was pretty sudden, which was completely annoying, but we were impressed once we got to see her new classroom, meet her new teacher and get a feel for the campus.  Jenelle's 1:1 Aide was moved with her and they both are enjoying the change.  

Jenelle started her 17th season with the Challenger Team at Tustin Western Little League in late February.  This year, grandpa Denny Curran is retiring after 32 years of volunteer service as the District Administrator for California District 30 Little League.  Jenelle has enjoyed playing with her friends, and celebrating Grandpa at a couple of opening ceremonies this year to honor his many years of service.  Enjoy some photos below of these fun events.

That is all for now - I'll continue to try to keep you posted!

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