That AED see-saw again...

Hi guys, we're back on that dreaded AED (Anti-Epilepsy Drug) see-saw yet again.

Too much drugs in the bloodstream mean yet more seizures and then there's an unexplained dip with not enough drug and that means even more of them!

It seems we just can't get a break these days so just like these wee frogs it's a continual up-n-down kinda thing this week!

Thankfully things seem to be settling a little so I think, at last, we're starting to come out the other side, well, I hope so!

The new personalised care system is now up and running.
It seems to be working out ok and even though it's early days, I think it's going to be a better system for us - woo hoo!
All we need now is Coo to settle a little bit more and then we can start working on getting fit!
This summer, we decided to buy some bicycles with an aim to improve our fitness but Coo's been so unstable recently we've not managed to sort things out yet. It'll be fun picking some new cycles. I think Coo will enjoy checking out all the details and me? Well, I'll probably just pick a girly purple or pink one! lol

I hope the weather holds out long enough so we can get out on a bike ride so...
Lets hope for some sunshine!
Happy days,
Maz x

St Swithin...

Hi guys, Good old Saint Swithin was way off this time!
It was dry on his feast day so we had a fighting chance and I was hopeful but...no!
It's rained and rained and rained this week, we're practically washed out! lol

Never mind, the welly boots and brolly has been well used this summer! lol

I got drenched nipping down the garden for some strawberries earlier! Although I have to say...
It was worth it!
The wee alpine ones taste lovely and  best of all...there's millions of 'em out there so...woo hoo!

Just how are things growing where you are?
Here everything is really late this year!
My tomatoes are still non-existent! The plants are healthy and strong and the buds are coming out now but by this time last year, I was already munching them with salad! I guess we really haven't had enough sunshine at all.
I think they're on a go slow! lol

Let's hope August brings some sunshine or my wee tangy toms will all still be green and only any good for the chutney pan!

Coo's moods have settled now the Social Services review is over and thank God for that! I was really worried about him as things were getting difficult to manage. I mean, more moods and upsets for Coo, mean yet more seizures and it becomes a bit of a vicious circle!
He's bouncing back again now so yet another crisis has been averted and that's the important thing!

Now things are settling and Coo's more like his old self, we can take our time and plan what we really want to do with our additional budget.
It's a long time since we thought of such things and it's quite exciting really but...what to do!

Maybe some fun activities, some days out, a wee holiday or...
a combination of all three!
Who knows but whatever we decide let's hope the sun shines for us. One things for sure, it'll be an exciting time this year - Coo and I have not really had the chance to get out and about much and this new self-directed-support, managing your own care and activities could make a real difference for us!

I do hope you're having some sunshine where you are  or at the very least some sunshiney thoughts!
(((hugs)))
Maz x

Happy Saint Swithin's Day...

Hi Guys and a Happy Saint Swithin's Day!
Isn't Swithin's window pretty!
It's all apples and raindrops!

Old traditional proverb...

St. Swithin's day if thou dost rain
For forty days it will remain
St. Swithin's day if thou be fair
For forty days 'twill rain nae mair.

I hope it's true this time around as for the first day in weeks...we've had no rain! woo hoo!

I hope Saint Swithin's has been sunny and fair for you too!
(((hugs))) Maz x

Tumbling times...

Hi guys, Coo's taken a bit of a tumble this week I'm afraid.

After the relief of sorting out all the care, I was hoping for a wee quiet week!
In a way, I suppose it has been!
The mood-swings have all gone and things are calmer but the seizure levels are still on the high side and to cap it all?
Coo tumbled out of bed during a seizure!


While that's not unusual, he seems to have popped his eye somewhere along the way! He insists it's ok, it's a little bruised and raised and I'm sure he's right but I'll keep an 'eye' on things anyway! Pardon the pun! lol

Where has the sunshine gone? 
It's been dire here!
Wellie boot and brolly weather right enough! lol
Don't get me wrong, it's warm enough, it's just really...wet!
I'm hoping the weekend, will show an improvement as it'd be nice to get out to the park for a bit, blow away the cobwebs!

We could sure do with some sunshine here!
I hope it's a sunny day for you where you are too!
(((hugs)))
Maz x

Review news at last...

Hi Guys, the care package review is now done too so.... 
a great big woo hoo!

It's really a huge sigh of relief all around!
SDS - Self Directed Support- is a new system and we were a bit worried that, in the end, it wouldn't deliver the services we need. To be honest, I was beginning to think this review was stuck in reverse gear, then all of a sudden, it's done and dusted at last!

Coo and I can let go of all those worries about finance, safe in the knowledge the funding is here now to cover all the care costs and outcomes for the coming year.
We know, we are lucky to have such a supportive local authority that understands the issues, struggles and  really, the demands there are, dealing long term with such a difficult disability and we truly appreciate all the support they have given us.
God alone knows how we'd fare without it -  I still remember those dark days when Coo and I struggled on alone. Trust me, it was not a happy time for either of us that's for sure!

I'm just glad it's over and we can confidently move on now.

The forcast this week is for some sunshine and now, with this resolved, I'm sure I can forcast some sunshiney thoughts for us too!  lol
I'm feeling positive things are improving for Coo and I!
Happy Days!

I sure hope you're having some sunshiney thoughts where you are too and if you're stuck in review? Don't give up hope, sometimes things do work out for the best!
Keep strong,
(((hugs)))
Maz x

Enlightenment at last the RAS is over...

Hi guys, this time we have reached RAS enlightenment! and...
Thank goodness for that!

The Social Services resources allocation system or RAS for short, has calculated an estimated budget for Coo's care package. Now we just need the local authority to agree the funding and then? Well, we should be good to go! Woo hoo!

Coo is less stressed this week as the care plan review is nearing the final stages...all going well that is! It's been a long and difficult road at times but I think we are winning and I'm hopeful the budget will be approved and we can all start to move on.

It's a worry when things are under review as there's always the potential it will all go wrong and we won't get the funding to buy the care Coo and I need to cope with things. I have to say, in the past, we have been lucky, usually we don't have too many problems and the care plan is agreed pretty quickly. This time it's a little different as we've been moving onto a different system all together! It's also fair to say, it's not been without it's challenges either and at times we've both struggled.

I just hope all the additional stress and struggle has been worth it and this new system delivers a better quality of life for us both so fingers crossed and here's hoping!

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

Moods, meds and reviews...

Hi Guys, I think, I may have spoken too soon.
Coo's still having problems with moods and anger so things have not been easy!

I contacted his Epilepsy Nurse for some advice and it seems he's not alone! The AED (anti-epilepsy drug), he added into the mix 18 months ago, can sometimes have these emotional & behavioural side effects. It's not common but it does happen so...Lucky us!
***but what to do now?

Well, the newer drug helps his seizures a little so he's not too keen on changing the drug regime but neither of us is keen on keeping the mood swings! I can see where Coo is coming from, the drug does take the edge of things a little and that's got to be a major deciding factor!

We've taken the time, thought about things and then we started to think, maybe just maybe, the current, protracted care-package review we've been struggling with over the last few months has played some part! I know it's been stressful, Coo's struggled at times and so have I so I guess it's certainly possible!
I decided to up the anti and contact Social Services.
This has gone on long enough!
If it's effecting Coo's health and we're both feeling stressed, the review either needs to be completed quickly or dare I say it - left for yet another day!

I'm pleased with their response, things have now taken a massive leap forward and seem to be nearing an end - thank God for that!
I hope, once this process is over and Coo's stress levels go down, the sunshine will come back and we'll be back on an even keel!

Here's hoping things are more settled and sunny for us all soon!
(((Hugs)))
Maz x