Tomorrow: Results Day
So this evening we travel up to Birmingham once again for results. Our son is doing his GCSEs at the moment so results are on our mind, but for Immi her results are different. Not exams but potentially no less life changing.
I’ve not really been thinking about it- just getting on with life, so this post is me finally engaging. But truly I don’t want to. I have no idea what they are going to say.
The surgery last November was to ascertain if Immi has RE (Rasmussen’s Encephalitis). A degenerative disease that presently has no cure. They can only prevent it spreading by doing a hemispherectomy (taking out the affected side of the brain). This surgery can have quite horrific side effects such a losing sight or speech or mobility. When I weigh up her quality of life I don’t think I’m ready for her to have this surgery. But if it is RE that is our only long term choice presently.
They may say there is nothing else they can offer. This will be hard for Immi as she is really pinning a lot on this appointment.
They may offer VNS (Vagal Nerve Stimulation) which is basically a pace maker for the brain. But I’m not sure this will actually help as there are mixed results and it appears to work better for those who have long net seizures where’s Immi’s are clusters where she comes in and out.
One neurologist mentioned CBD to us, but presently there is not NHS route to this. Yes, it was made legal to prescribe last November but British neuros haven’t yet prescribed unless it was a course already started overseas.
There may be another direction that I know nothing of, I’m praying there is!! But to be honest I think our choices are very limited. Watching her seize daily with absolutely nothing I can do is heart breaking. Yesterday she had a period of an hour when she had a short seizure every five minutes. And yet, she keeps battling. She keeps going. She shows resilience and determination every single day.
My hope for her tomorrow is that she stays strong no matter the result. That if they cannot offer anything further that she won’t spiral into sadness. That she will
know that life is still worth living, that she can still find joy in the tough times and that she can keep being an example of resilience and strength to all who know her.
Thanks to all of you who follow her, and our story and send love, prayers and messages of support. We are thankful for you all xx
Here are couple of songs that often keep us going:
On the Battle field: https://m.youtube.com/watch?v=2yTEWs_rPUM
Take Courage: https://m.youtube.com/watch?v=LJoABwNMzvM
I’ve not really been thinking about it- just getting on with life, so this post is me finally engaging. But truly I don’t want to. I have no idea what they are going to say.
The surgery last November was to ascertain if Immi has RE (Rasmussen’s Encephalitis). A degenerative disease that presently has no cure. They can only prevent it spreading by doing a hemispherectomy (taking out the affected side of the brain). This surgery can have quite horrific side effects such a losing sight or speech or mobility. When I weigh up her quality of life I don’t think I’m ready for her to have this surgery. But if it is RE that is our only long term choice presently.
They may say there is nothing else they can offer. This will be hard for Immi as she is really pinning a lot on this appointment.
They may offer VNS (Vagal Nerve Stimulation) which is basically a pace maker for the brain. But I’m not sure this will actually help as there are mixed results and it appears to work better for those who have long net seizures where’s Immi’s are clusters where she comes in and out.
One neurologist mentioned CBD to us, but presently there is not NHS route to this. Yes, it was made legal to prescribe last November but British neuros haven’t yet prescribed unless it was a course already started overseas.
There may be another direction that I know nothing of, I’m praying there is!! But to be honest I think our choices are very limited. Watching her seize daily with absolutely nothing I can do is heart breaking. Yesterday she had a period of an hour when she had a short seizure every five minutes. And yet, she keeps battling. She keeps going. She shows resilience and determination every single day.
My hope for her tomorrow is that she stays strong no matter the result. That if they cannot offer anything further that she won’t spiral into sadness. That she will
know that life is still worth living, that she can still find joy in the tough times and that she can keep being an example of resilience and strength to all who know her.
Thanks to all of you who follow her, and our story and send love, prayers and messages of support. We are thankful for you all xx
Here are couple of songs that often keep us going:
On the Battle field: https://m.youtube.com/watch?v=2yTEWs_rPUM
Take Courage: https://m.youtube.com/watch?v=LJoABwNMzvM
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