Define normal challenge...

Hi Guys, I came across this and thought it was a good idea.
It's a define normal blog challenge!

Well, what do you think? Sometimes, I tend to forget, what we perceive as normal, other people from what's considered normal families are kinda shocked by!

This week, well to start with, Coo's speech was a little slurred and he felt poorly so...

Appointment  #1 was on the cards -

More blood tests to check AED (Epilepsy drug levels), were ok and white cells too, just in case he'd picked up an infection...again!

Appointment #2  - That was for the results and to get the drug doses adjusted as he did have an infection!

Appointment #3 - Well, that was the most concerning one as it was with the Neurologist. It seems we're at the end of the road with drug therapies, there's little improvement in seizure activity levels and while that's bad enough, the main issue was the fact, our Neuro calmly dropped into the consultation, the fact Coo is now a high risk for a SUDEP, a sudden unexplained death in Epilepsy - well...okay.

Of course we accept this and take it in our stride - we've always known there was a risk and that's normal for our family. Just another ordinary week but while it's ordinary for us, it's not so for the other people around us and that's the bit you sometimes forget about isn't it!

People were genuinely shocked by this latest turn of events and when I think about it so should we have been - shouldn't we?
On reflection, I think it's part of our coping strategies, you just kinda accept what is said, take it on board and carry on regardless don't you!

I wonder what kind of 'normal' week the other bloggers have had - I guess we'll see, won't we!

(((hugs)))

Maz x

Carer, Coo and Hospital too...

Hi guys, it's been another difficult week I'm afraid!
When are we gonna catch a lucky break!

Still saddened by our wee dog leaving us last week and a seizure increase as Coo's been struggling, we set off to an appointment with Coo's Neuro.He's a really nice guy, he's always friendly and treats Coo kindly  so...what was the problem?

Well, it seems, we've reached the end of the road with AED's (anti-epilepsy drugs) yet again and while it's not a new area for us - we were at this point many years ago - it's still a blow.
So what do you do now?
Well, you just manage, kinda carry on regardless and hope some new meds come on the scene.

I think, if I'm honest, we both thought this was coming as when Coo re-entered the system six years ago there were four new drugs on the market and he's tried them all so it shouldn't have been too much of a surprise - should it?
I think, maybe, you always hope there's something else to try and who knows maybe in a few years, something new will pop out of the wood-work!

The meds aside, what I did find difficult, was the Neuro discussing SUDEP -  it's when a sudden unexplained death happens in Epilpesy.
Now, don't get me wrong, we both know Coo's at risk from lots of problems - his horrible time with Aspiration Pneumonia, left us with no illussions on how quickly things can deteriorate. We tend not to think about this side of things, I guess it's a coping mechanism especially when things are tough.

  

I think the Neuro. brought home, just how tenuous things really are and I suppose while we were still trying out other meds, the issue of a SUDEP didn't really need to be raised and now we're at the end of the road again, well, I guess it had to be discussed.

Coo didn't even aknowledge the situation at all!
He just let it slide!
Although, we did discuss it over a cuppa later that day and we've both decided...

 If, and I mean if, the worst were to happen, well, we've no regrets, we've had a good life together and lot's of love both between and all around us - so in the full scheme of things, we're lucky aren't we!

So...I'm ending today with some sunnier thoughts...
We've decided. We 're not going to dwell on things.
If new drugs come, then fine and if not? Well, we'll do what we always do...keep on going together, what else! lol

We're doing ok and I hope you are too!
(((hugs)))
Maz x