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Thursday, 21 August 2014

Appointments and time outs...

Hi guys, it's been another busy week, what with appointments, paperwork and just getting organised!

Ok appointment 1...

Coo's bloods are still problematic and he has an increase in seizures too so he's having more bloods done again this week. He just can't seem to catch a break at the moment. We're going to wait for the blood results and then... we'll regroup and decide just what to do. - we're coping and that's the main thing!

Appointment 2...Good news!

Remember my post about my Shonky eyeball from last year? - here's a reminder!  Well, I've been visiting hospital for the last year and now the results are in! No treatment required - woo hoo!  Turns out I have a tilted optic disc, it's been checked and it's nothing to worry about so...result!

I've one more appointment to go...and it's a good one! lol
I'm off tomorrow for a wee time-out and with other Carers too!
We're going on a visit to  'The Ayr Flower Show'
I've never been there before and it looks great and best of all? I'll be able to have a laugh and a fun time out with other Carers at a wee change of pace!
Thank you SDS (Self Directed Support) - Regardless of how things are, tomorrow, Looby will come keep Coo company and I'll get to poke around the flower show and most probably indulge in some plant buying! lol

I'm hoping for some sunshine and if not, well, there's always the wellie boots! lol

I'm faring ok here and I hope you're doing ok too!
Maz x

Tuesday, 12 August 2014

Carer Roller-Coaster ride & Harping on...

Hi guys, it's been an up and down kinda week. You could say, we're back on that roller-coaster ride again!

Coo's blood/drug levels are yet again problematic...
The safe range is between 10 and 20 and Coo's latest results? 24! - Ok, choices, do we reduce the doses again or do we stick, sit it out and see what happens?
We're not quite sure yet, Coo's seizures are no worse, he's stuck at around 10 a day but then again, it's been A lot worse and we coped. Only thing is, he's really sleepy but he's coping and usually any changes just set it all off again!
I think we'll see how things are overnight and regroup in the morning!
I've been keeping busy, while stuck in at home so I've had plenty of time to...harp! lol
I love it, it's just so very soothing to lose yourself in the music for a wee while, I guess, it takes me somewhere else and on a difficult day, that can be a real good thing!
Don't worry I don't really dress like this while harping - well not often anyways! lol  but this photo just goes to show that harping has been around for the longest time!

Whatever your passion is, be it music, crafts or cooking, give it a bash! I say, anything that helps you cope and stay healthy, hale and hearty and doesn't hurt ok in my book!
Keep strong
Maz x

Saturday, 2 August 2014

Busy, baton, travel and fun times...

Hi guys, where has the time gone! I just turned around and July was all gone!

Coo's seizures have been so problematic over the last month. We've been adjusting the meds, and just hanging on in there so it's been a bit difficult at times this month but....we've had some great moments too!
Where to start... ok!
The Baton...
The Queens Baton Relay finally made it to Ayrshire and a good time was had by all! How exciting the whole day was! All the expectation and excitement was worth it - I had a wonderful time! The town was so busy and everyone was cheering me on, I guess there was a real feel-good factor all around and it was just so brilliant to be part of it all!
A lovely celebration for all our baton bearers and their guests. We had four Carers from our group who were carrying the Baton so we decided to take another four of our Three Towns Carers as our guests. This meant eight Carers got a wee night out and dinner with Provost Joan and I'm glad we did it this way as Carers seldom get the chance for a fancy night out with free dinner thrown in too! Everyone enjoyed it so...Result! lol

Our nephew Craig, lives in Germany and we made it all the way to his wedding - woo hoo!
Bearing in mind Coo's current erratic seizure activity and the stresses with changes in routine, it was no easy feat, it took a lot of planning and a great deal of organising but we made it! Previously we would have had to regretfully declined his invitation and stay home but the flexibility of our SDS (Self Directed Support) Care package, gave me belief that maybe, just maybe, with careful planning and support, we could do this - and we did! Oh I'm so glad we did, it was so wonderful!

So, just how did we manage it all?
Ok, Lobby was always coming with us - we would never have coped on such a trip without support so with her along it all seemed manageable!
A hotel was out of the question - Coo's seizure activity is so noisy and aggressive at the moment, it would just not have worked being in a small hotel room with other guests disturbed either side so we opted for an apartment with a lovely German family on the doorstep to lend a hand with language, directions and local information etc. - sorted!
The wedding was over two hours from the nearest airport and if we wanted to do some sight-seeing too, we'd need a driver - we asked our son in law Stevie to come along and drive for us - sorted!
We struck gold with our choices the apartment was very large and secure and just what we needed for a base for both the wedding and to allow a little touring too! woo hoo

We found the most cost effective and easiest route for flights and just hoped for the best, everything would work out - best laid plans and all...we got delayed...for hours and hours but at least with all the support around we managed to take turns keeping Coo occupied and calm...mostly! There were some hairy moments but we coped! lol
The wedding was the main reason we went to Germany and it was a wonderful day and here we all are - check out the guys in their kilts! I'm so glad we got to go!
We even managed a boat-trip on the Rhine and a ride in a cable-car high up to a Castle too!
What a wonderful time we had!
I'm so grateful for the SDS package that made such a wonderful trip possible - we would not have managed alone, we just could not and would not have gone at all and that's such a shame! The flexibility and positivity that SDS has brought us is beyond price, it's given us a can-do attitude and opened up so many wonderful possibilities. Previously, so many doors were closed for Coo and I and SDS has changed that, in fact it's changed us too!

When SDS comes your way, please don't be afraid of the change - reach out with both hands and grab it!
Maz x