Hi guys, well 2020 hasn't gone swell has it!

Hi guys, 2020 has been pretty awful for us but we're surviving...just!
Dad...
My Dad went out to his usual podiatry appointment in March and took a stroke. It was a mad dash to our local hospital in Kilmarnock but with each passing minute it was becoming more and more apparent he wasn't going to make it. Originally I was told it would be hours but the wee soul clung to life for another eight sad, painful, days. My sisters live in England and Spain so at least they had time to see him.

By the end of the eighth day we were just praying of a blessed release for him. He died on a sunny St. Joseph's day (March 19th) which is a comfort as St. Joseph is the patron saint of those at their end of life, we're Catholic if you hadn't guessed! I've taken some comfort in the fact he's back with my wee Mammy now but it's all still a bit raw.
SDS...
We were lucky as our SDS (Self Directed Support) care package, kicked in seamlessly so I didn't need to worry about care for Coo. Looby our P.A. came to stay with him to allow me to stay over at hospital with my Dad on those last few precious days and what a weight off my shoulders that was!
We thought the worst had passed but oh my we were in for a bit of a rough ride -
A Lockdown funeral...
Lockdown kicked in didn't it. We weren't even sure if Dad's funeral would be able to go ahead at all. We moved fast, saw our priest and Dad ,being Dad had a funeral plan all arranged with our local undertaker so thankfully after much tears and troubles - half the stuff he'd arranged in his plan could not now happen due to COVID-19 restrictions - but we did at least get a mass!

The very last one in our church before they totally closed down but no hugs and no sitting together, we couldn't even get in the family car! Immediate family only, no cords for family either, the poor cemetery workers laid Dad into his final resting place. It was all so different from two years earlier, where Mammy had a night of rest in our church, a full congregation of family and friends and a lovely funeral tea to share with our family but Dad would have understood. We did our best and at least he got his mass!
Isolating...
Fast forward four months and we're still in limbo. We're both still Isolating!
Like lots of other people with disabilities COVID-19 has reeked havoc! We're both high risk as I have RA (Rheumatiod Arthritis) I'm immune suppressed and Coo has COPD and his Epilepsy? Well any infection or raised temperature spikes his seizures crazy - he won't risk the hell of infection and seizure city he had some years back with pneumonia so we're in for the duration!

All in all 2020 has been a pretty traumatic time but with things in Scotland seeming to be heading in the right direction with suppressing the virus, hopefully we'll be coming out the other side sooner rather than later!
Lastly, a huge thank you to our wonderful NHS!

Thanks...
Dad was in the Acute Stroke Unit in Crosshouse hospital Kilmarnock and the staff were wonderful, caring and kindness itself. Without their attentiveness we would have found ourselves in such a painful and more difficult position. These caring staff really made a huge difference at what was such a very difficult time. Bless them.

Stay strong friends, never was it truer than now, only by working together we can really help one another!
Keep safe.
((hugs))
Maz x

January Burns Day, Birthdays and Carer Business...

Hi guys, what happened to January? I turned around and it's just about gone!

Ok, what's been happening?
Well, Firstly...Happy Burns Day!

January 25th is a special day for us, not only is it Burns Day, it's Jessica's day too so...
Happy 3rd Birthday Jessie!
Not only did we have birthday cake and the usual treats but in honour of Rabbie sharing Jessie's special day (or the other way around!), we had haggis, tatties and neeps too -what a great wee family day!

Health...
Things are still a bit of a struggle here, Coo's just being Coo - loads of colds and sniffles about and loads of seizures too but on the whole he's fine and me? I had that wee health scare at Christmas, thankfully not a stroke after all (MRI was clear!) but I'm no further forward regarding what really happened and with around 18 weeks waiting time to see a Neurologist, I have a feeling this will run and run. Good thing is, the symptoms are no worse and we're coping so it's all fine!

Now to business...

It's good Carers are now involved through most practices and processes with our Local Authority. In fact it's a welcome change as it's not so long ago Carers were more or less told what services were available and had to try to make them work but...not anymore! From Carers Strategies, Advisory groups and support planning, we're involved and in the case of the SIB...we have a seat on the board! Changed days and that can only be a good thing!
Stay strong friends and keep fighting, we'll get there!
(((hugs)))
Maz x

Happy days, Hospitals and Carer Thoughts...

Hi guys, did everyone have a happy Christmas? Ho ho ho!

We had a lovely day!
We made it for dinner at Coo's sisters and a great time was had by all!
We're still struggling along with the usual health hassles but everything went well on the day and for that we're mightily thankful!

The cheerful, festive feelings didn't last long though and we were at the hospital for yet another Christmas time - my MRI arrived on the horizon. I suppose it was better done sooner rather than later but I'm just fed up of the whole situation already!
I've discovered I'm not a particularly good patient.

I really hate being on the cared for side of the equation and can sympathise with Coo...it's down right rotten! Now, I'm not sure if it's the continuous appointments, meds hassles and bloods with Coo over the years or not but having lived it so long with someone else, I just don't seem able to muster up the energy to go through it all myself - I feel kinda battle hardened even though I've never really been ill myself at all! Does that make sense?
Who knows, maybe it's just par for the course for most Carers!
Anyhow, The symptoms are no worse, they're no better either...but they're no worse! We're both coping ok and I've survived the first round of tests so...now we wait!

2014 has been a great year!

Health-wise it's been challenging but we've been so blessed in other ways too! Our grand-daughter Jessie's surgeries went well, her walking is improving all the time! A new wee grand-baby came along too! Wee Islay arrived in October, she has similar hip problems as Jessie but they'll fix and she's bonny, hale, healthy and happy!
All the buzz with the commonwealth games and my wee stint with the Baton gave us a major feel good factor too so all-in-all it has been a good year this time around!

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

SIB, Advisory group, Carers meet and new babies too...

Hi guys, what a week - I've been busy again!

First up...
I was out with my Local Authority and NHS Health Trust - I'm the Carers rep on the shadow integration board (SIB) and try to make sure Carers voices are heard just about as often as I can!

Next up...

I went along to the latest Carers Advisory Group last Thursday. It's a good meeting, Carers from our area, meet with the Carer champion councillor Steel and other council representatives and Carer services providers to discuss, issues and concerns. It's only by working together we can successfully change things and get a better deal for Carers.

 

Fun times...

On Friday, some of our Three Towns Carers went over to Irvine for a master-class in, of all things, hanging baskets! lol Now I grow loads of veggies and fruits but I'd never arranged a hanging basket before and guess what? It was fun!
Eight of us had a ball, planting up the baskets and tea drinking! What a pleasant way to spend a wet Friday morning!

I kept the best news for last...

Our new wee grand-baby arrived this week so...
meet baby Islay Eve with her big sister Jessica!
We're just truly tickled pink with the both of them!

 All in all it's sure been a busy week and it's been a happy one too!

Next up, it's the Carers Parliament on October 8th!

I hope you've had a good week too where you are and if you're at the Parliament...shout out for Carers!
(((hugs)))
Maz x

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!
Next...
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

Germany...
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

Flights...
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!
(((hugs)))
Maz x

Jessie The Brave's Birthday Tea...

Hi guys, wee Jessie is two today!

What a roller-coaster ride this year has been for her, between surgeries and Spica casts she's had a difficult time and it's been emotional too but not today! Today...we were celebrating! lol

We decided to have a family tea party and as Jessie's a Burns baby, sharing her special day with Robert Burns no less and being Ayrshire folks....we had some tartan on display too! yeah!
We got a 'Brave' cake as Jessie's a brave wee soul.
I thought it apt and I was going to write on it - Jessie the Brave is 2 today but...I was out-voted! - we're a democracy here, one singer one song and one person one vote! I did get my way with the tartan touches though - a family tartan ribbon all around and it looked real good too! lol

I'm sharing a wee family photo too, it's one with Jessie, her parents and that lovely cake!
No Spica casts and doing so well, we are blessed!

What a lovely end to a really great week!
(((hugs)))
Maz x

2013, the good, the bad and the down right ugly...

Hi guys, 2013 had some good, bad and downright ugly points!

I want to end this post on a good note so we'll start with the bad and ugly side of 2013!
Like most Carers it's been a difficult year. For Carers, it's truly, never very easy but in 2013 there's been added pressure too that's for sure.
Our government's been less than supportive at times, their 'War on Welfare' and general uncaring attitude towards truly struggling disabled people and their Carers, has caused untold distress and suffering for people, like us, already paddling hard to just keep afloat!
Sad thing is, the up to date stats show there's very little financial gain for our government's stance but they're still intent on their path of social destruction and they've successfully used our media and their 'shirkers and strivers' rhetoric, to turn communities against one another - and that's truly ugly!

Coo and I have struggled through. It's been a difficult year, but also one full of trials and triumphs.
The trials?
Well, as always, there were many difficult times with real health worries throughout 2013.
*Health - living with serious long term conditions is always stressful and difficult!
*Family - Baby Jessie's very late, hip-dysplasia diagnosis was an additional worry, the on-going surgery problems she'd face too.

As if that that wasn't enough, we felt under siege by our own government.

The saga of Bedroom Tax and ATOS  all added to the stress and strain that was our 2013.



The triumphs?
*Health - I'm sure we triumphed - we're still here aren't we! also coming out the other side with wee Jessie -  3 successful surgeries and at last getting rid of the heavy Spica casts.
*ATOS - Seeing off the ATOS threat, wasn't easy, it was very stressful. Coo struggled most, the seizure activity kicked hard, we were stuck in at home on that scary roller-coaster ride again. I guess we just held on for dear life and hoped, they would see sense and the nightmare would end...and it did...for now anyway!
*Bedroom Tax - We so stressed with this issue!
We could not move - our house is adapted - we need the rooms we have, either for staff who come in to help or for respite sleep periods, to help me keep going but yet again, due to the stress of it all, we were plunged into chaos as Coo's seizure activity went off the planet and we again struggled!

We asked everyone we could think of, who had an influence to help.
Our MP raised our plight with the Prime Minister himself.
In the end, we secured a Discretionary Housing Payment but the saga that is 'Bedroom Tax' will raise it's ugly head again in March-April time.
*SDS - We used our SDS (Self Directed Support) care package and funding so successfully! In times of difficulty and struggle, when Coo was well enough to, we disappeared for a few days respite, turned off all the stresses, took a time-out and recharged our batteries for the next onslaught! I'm not sure how we'd have fared without this much needed help and support!
*Speaking out for Carers - I was happy to speak out, share my Carer story and try to encourage other Carers to seek help - we can only help and encourage people to see us can't we?

My granny used to say it's a good life if you don't weary and...she's right!
so...
Hello 2014 and here's to not wearying!
(((hugs)))
Maz x

NHS, Review, Support & Action...

Hi guys, I've been busy!
Things have moved on apace with our NHS and Hip Dysplasia issues and thank goodness for that!

We (Looby & I), had a meeting yesterday with NHS people from both Community Nursing & Pre 5 Childrens Services and Midwifery, to discuss the issues raised at the NHS annual review.

We raised our concern and said we really felt, there was a lack of information surrounding Hip Dysplasia (DDH) in general - just what do you need to look for?
We discussed how this could be addressed and improved and I'm pleased to say, actions were discussed and agreed surrounding further training for staff, additional awareness raising and general public information sheets & posters.

Best of all, they agreed to supplement the information given to new parents to include a wee section on Hip Dysplasia symptoms and what to look for as we had suggested. We thought the most helpful information would be, letting people know to check the wee fatty folds are symmetrical on the baby's thighs. It's a clear visual marker the hips are displaced and could need attention and it's so easy to see.

Sadly, we only found this out, while searching for support after Jessica had been diagnosed at aged18 months! We quickly realised to our horror, we had noticed this with baby Jessie as early as the first four weeks after her birth and thought she was just a 'wee chubby baby'- we just didn't know it was a problem!

With the additional training for staff and the proper info on the signs to look for given to new parents, hopefully we'll start to catch these wee people quickly and really avoid the need for painful, invasive and expensive surgeries and...if this happens, I will be a happy Maz...in fact, we'll all be happy!

(((hugs)))
Maz x

Difficult day, Surgery and Struggles...

Hi guys, it's been a difficult few days here.

Baby Jessie's surgery was yesterday.
Coo struggled to cope with the additional stress and I struggled too with the additional seizure activity but after the wee one's surgery was over, things began to settle so all in all we coped!

I think the angels were with us and I kinda like this wee picture.
I mean, it has my two favourite things in all the world...angels and best china tea-cups - what's not to like! lol

Jessie was in surgery for over six hours, they didn't manage to complete all the work required so she will need yet more surgery at each cast change - every six weeks or so. We're not out of the woods yet but at least the first steps have now been taken and we're hopeful and positive about things!

Looby and Steven coped really well too, on what must have been a difficult day for them. We really wish it wasn't happening at all but it is what it is and I think we're just glad this is now moving and things can start to improve for wee Jessie.

Coo and I will get in to see them all today for a wee while and that in itself should help Coo calm down. It's at times like these, you realise how important family life really is and you kinda hold tightly to the belief things will all be ok!

For anyone else going through this worry too... a huge (((hug)))
Keep strong!
Maz x

Chickenpox...

Hi guys, what a week we've had here!

It's official!
Wee Jessie has chickenpox and millions of 'em at that - poor wee soul!
We were so annoyed at the time but it's just as well her surgery was cancelled last week wasn't it! A full body spica cast and the chicken pox would have been just awful!
Things really do happen for a reason don't they!

The new surgery date is the 20th of August.
Looby, Steven and Jessie all went for the pre-op last week - before the pox came, I might add!- and met with the surgeon to discuss things further. I've gotta say, I was shocked when they told me it's a seventeen and a half hour operation! I guess, well I was really hoping, it'd be a nip-and-tuck kinda thing with a bit of maneouvering and maybe a couple of hours at most but we're under no illusion now. I fear, it's a big operation and a long road ahead for wee Jessie.
It is, what it is and we'll get there!

Coo's struggling on, he's been sleepy and seizing most of the day but he's hanging on in there and me? I feel like I'm mentally battening down the hatches for the next onslaught!

In a positive moment during the week, I decided we needed a wee time out so...
I booked a theatre night away for Coo and I!
Coo likes a wee jaunt up to Glasgow every so often and we both benefit from the change of scene for a wee while!


It's always a bit touch and go, if we will make it to these things but more often than not, with careful planning and plenty of rest time, we usually manage! It's just really something positive for us both to look forward to and aim for.
Our SDS (self directed support) care package, makes it so much easier to cope with things especially when we are struggling.

It's so great to know support is there and within our reach, when we need it and what a difference that's made in itself!

We're trying to stay focussed on the positives and just keep it all together! The main thing is we're doing ok and I hope you're doing ok too, where you are!
(((hugs)))
Maz x

Sometimes, Carers health comes last...

Hi guys, things are still a bit up and down here I'm afraid.

I cancelled my hospital appointment, it was just going to be too much hassle in the end.

Coo had a bad night, we were both totally shattered this morning and to be fair, an early appointment, at the general hospital, which is a good bit away near Kilmarnock, was always going to be problematic for us at best!

The recent developments with baby Jessie, meant Lisa was busy at appointments this morning too and I would've needed to take Coo with me so...I opted for the less stressful measure and cancelled my own appointment.
I know...I know!
Carers should look after themselves too it's important! and usually I really try to but with the week we've had, the family issues and increase in seizures already and last nights activity on top, I just couldn't face hanging around Crosshouse Hospital for hours on end and with Coo in tow too!

I will make a new appointment and promise to try harder next time!

(((hugs)))
Maz x

Next on-slaught didn't take long...

Hi guys, it didn't take long for the next onslaught to arrive!

We're struggling, Coo's seizure level is up again and it probably is down to stress this time. We've had some difficult news today, our wee grand baby Jessie has to go into hospital.
Turns out she has a badly dislocated hip, she's had it since birth and it seems the NHS missed it.  With all the checks these days, I don't know how it was missed but there we are! The wee soul is now 15 months and just starting to walk and that's when we saw she had a wee awkward gait.

Jessie will need a Spica Cast surgeries and some rehab too to learn to walk again and we're a bit shell shocked at this latest news.


We're so heartfelt sorry it wasn't picked up sooner as it'd have been easier to fix but we will do what we always do - keep strong, pull together and get through!

Wish us luck,
I hope things are more settled where you are,
(((hugs)))
Maz x