Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
February 14th
When someone asks what I’m doing or did for Valentine’s day I smile politely and say something along the lines of ‘quiet night in with Him Indoors’. Mr V and I have attempted to go out for Valentine’s day once since the Dude arrived on the scene. Let’s just say it was not an experience we wished to repeat involving a minor car accident, us standing the rain for many hours waiting on the recovery truck and both of us agreeing to stay at home next time!
Valentine’s day for us has a much greater significance than flowers and a disastrous attempt at date night however. Did you know St. Valentine is the patron saint for epilepsy? In this house that fact alone makes it worthy of note, but it is also the anniversary of the Dudes life-changing VNS surgery. In this house, Valentines day is a celebration of how far our amazing boy has come thanks to that incredible little implant.
It's quite hard to believe that is was 7 years ago that the photo above was taken.
The VNS doesn’t stop the Dude’s seizures entirely but have given him precious respite from their constant assault on his brain and body. When people ask how many seizures he has they are genuinely horrified to hear he has around 6-10 every day; the VNS stops an average of 60 seizures DAILY from developing. Can you imagine the impact that level of seizure activity has on a developing brain? By reducing this, his VNS has allowed him to develop cognitively, to improve his communication skills and to have a vastly improved quality of life.
We are acutely aware that our boy is one of the lucky ones as the VNS doesn’t work for everyone. It’s classed as a palliative measure, not curative, so although it has been reported to stop seizures completely in some cases this is the exception. When my boy went down to surgery that day I can remember praying for it to at least help him a little bit, because it just HAD to. 7 years on, while we still feel it should have at least a small LED visible at the skin surface (the Dude thinks a more Iron Man style chest piece would be appropriate) so we know we have actually activated the implant with the magnet, it is still an awesome piece of kit. So, on February 14th we will indeed be having a quiet night in, all three of us, to take time to enjoy just being a family. Happy Valentine’s day everyone.
