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.
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| Mom, Jenelle, Jack, Grandma and Dad in San Bernardino |
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| Jenelle and Daddy at Home Plate |
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| Jenelle living her best life at the park. |
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