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Sunday, 21 November 2010

Looby's wedding fast approaches...

Hi Guys,

Remember way back in January when I mentioned Looby's wedding? well, is almost upon us!

Where has the year gone!

I'm getting a bit excited now and just hope everything goes ok on the day!
The invitations didn't go out till later than usual for weddings as Steven (the groom!) was still out in Afghanistan right up until two weeks ago but thankfully he's home safe and sound and they've all been posted out now!

All the preparations that are going to be done have been done so fingers crossed we've remembered every thing and anything we've forgotten?...
Well it'll just have to stay forgotten now! LOL

I'm trying to keep a lid on things a bit for Coo as the last thing we need on top of the new meds is a big dose of stress so it's the softly softly touch with him and a smiley 'everything's fine Babe' response!

To keep things busy - I never do things by halfs...
It's winter week in the local Community Centre where I work so I'm kinda up to my eyes in it there too!

I will be busy with Santa in his grotto, dressed as an Elf in pointy ears and all! LOL It's usually jumping, over 150 children came last year to speak to the big man in red and get some chocolate!

This year 'Owl Magic' are coming...Woo Hoo or maybe that should be hoot hoot! LOL
I'm sure the wee ones will love getting their picture taken with the Harry potter snowy owl and his friends and best of all the mum's will love the fact it's all FREE!

I love hosting free community events as all children benefit, especially the little ones from families where there is little money to spread around on such things.
A present from Santa and your very own picture with a snowy owl can make such a difference - the smiley faces all around tell me that's true!
Spread some Christmas cheer and if it's done for FREE that's good enough for me!

Wish me luck, I have a feeling it's going to be a busy, busy, bumble bee week!

maz x

Thursday, 11 November 2010

The N.H.S. and the supported Carer...

Hi Guys - there's been a bit of movement on this!
The N.H.S. has come good and thankfully, I'm not so unsupported after all!

Turns out our GP was as hopping mad as we were!
He says, he didn't refused to prescibe the drug at all!
He asked the neuro on several occasions, to clarify who would do the monitoring as here the guidelines say, an E specialist is to monitor closely within the first 3 months.

Anyways, the long and the short of it is...the neuro has decided to relent and reinstate him back to his clinic! In the end I think even he's realised this whole situation was not handled well!

Our GP will now prescribe the drug as the ESN (Epilepsy specialist nurse) has agreed to the do the monitoring - which was all our doctor asked for in the first place!

Now couldn't they just have played nicely in the first place?

I'm just glad this resolved so quickly as from past experience, it's very stressful dealing with NHS issues - it kinda grinds you down. Thank God for the E nurse - she's the best and thank God too it's been sorted!

So...just like this wee kitten...
it's big smiles all around! LOL

Let's hope the new drug helps - even a little would be good!
maz x

Sunday, 7 November 2010

N.H.S.and the unsupported Carer...

Hi Guys, I think it really is hard hat and flak jacket time here.

Things have taken a tumble and the N.H.S. is to blame for all the stress I'm under at the minute!

A quick re-cap of the story so far...

Coo's Neuro is a real nice guy...usually!
We've never had any problems and felt sure we could trust him in giving Coo the best care possible and we've never had anything shake this belief and trust...until now that is!
In August, the neuro wanted to have Coo try out a new drug and we agreed as at this point, still with 10 - 15 seizures every day, we thought, almost anything was worth a try.
Anyways, we agreed but our GP and he's a good, caring and trusted, family doctor, did not want to prescribe the new drug as it needed to be closely monitored.
So...we've been waiting around for almost four months trying to sort out who would be responsible and who would prescribe this drug that may or may not help Coo!

Now hold onto your hat for this one...It's been decided...nobody will prescribe!
We've had a very curt 3 line letter saying as the GP won't prescribe this drug the neuro will no longer see Coo and he's been discharged from the Epilepsy clinic!
Now correct me if I'm wrong but isn't the health service there to support people with severe disablilties and their Carers? people just like Coo and I who are struggling daily to cope with major disabilty and health problems?
Well, I thought so too but it looks like, when you scratch the surface, things are not so cut and dried.

I'm hopping mad and fit to be tied!

I immediately contacted the neuro's secretary, who has only ever been a very nice, helpful person before, to raised my concerns.
I told her, I do not agree, Coo is well enough to be discharged from the care of a neurologist given the problems and difficulties living and coping with such a high level of seizures. I mean, it's only a few weeks ago the out of hours medical services here, contacted us to say Coo's latest blood test had registered overdose levels, was toxic and needed to be reduced immediately.
Now, does that sound stable to you? Me neither!

I only hope the Neuro decides bearing in mind, both Coo's health and my objections, to reverse his decision and continue to at least try and help Coo.

Neither of us ever want to be in the position we found ourselves three years ago. Coo hit a major crisis point, with thirty seizures a day, was not under the care of a Neuro and it took almost six months to access the system and get some help.

It's a time neither of us will ever forget and probably the darkest time we've ever had. We felt so powerless and bereft and hell will freeze over before we find ourselves left in so un-supported a postion again!

I've dug out my hard hat but I really hope this resolves before things turn ugly!

I hope you're experiencing a more settled time where you are!
maz x

Friday, 5 November 2010

Happy Guy Fawkes night...

Hi Guys! Well come on, have you got the sparklers out? lol

Happy Guy Fawkes night!

I must admit though, I'm a bit like this little pic, watching it all from the cozyness of inside!

Fireworks are really pretty aren't they!
They seem to bring out a smile! Even on the coldest bonfire night, there's usually plenty of rosey cheeks and smiley faces around.
I think they bring out the big kid in us all and that's not such a bad thing - just to forget your worries and have a bit of fun now and again! LOL

I hope you're enjoying some firework fun too and more importantly keeping warm with lots of hot chocolate! Mmmmm

Maz x