14/01/2025
Good evening everyone, we hope this post finds you all well.
Just a little update as we went to the hospital today for our first VNS check. It blows my mind what data is held on this device that they swipe and upload for the consultants to analyse and share with us. To then be able to alter and tweak the levels, due to side effects and increasing to try and help with these seizures. As I’ve said before every two weeks it increases slightly but they went up a level on the base shock, they have also lowered the time from every 5 mins to 3 mins due to seizures and clusters that are happening, it’s all new and will still take a while before we have the levels right.
They told me that Emily is having at least 2 major seizures a day that the VNS is stopping, some smaller seizures/clusters and the occasional larger seizure are still sneaking through but we are focussing on the positive side of how well the VNS is working for Emily.
We have been told to keep an eye on two of the side effects with Emily which are jolting and swallowing especially when the wire is ‘live’, slightly concerned but all being monitored, we can’t ask for more than that.
I trust this team, they have cushioned my children and my family for nearly 22 years as they started treating Sid when he was months old, they are our medical family and I truly owe them so much, I think my hugs just aren’t enough 😂.
Anyways, Emily cruised the appointment today and we go back in 3 months unless anything wonky happens inbetween.
Much love to you all, be kind to each other and thank you for all your loving and supportive messages ❤️ ###
