Hi, Carers struggles again...

 Hi guys, it's been such a long time since I blogged but yet again we're back in the mids of another health crisis and I find myself drawn to blog it all out!

Struggles

Coo is poorly, he picked up another chest infection a few months ago and it's never really left! This has meant a crazy increase in his daily seizures - he has poorly controlled sleep seizures at the best of times and this latest infection has created a challenging spike! We were managing but the gradual decline just wouldn't let up. We've saw his Epilepsy nurse and tried upping the AED's (anti epilepsy drugs) for the seizure spike and antibiotics with varying success, any infection is problematic. Nothing is working. 

Things are difficult if Coo needs admitted to hospital as he needs a side room and me to stay with him as his unpredictable seizure activity can't be contained in a ward. We've been there and it's awful for all concerned so we avoid admissions like the plague! 

A few nights ago, things deteriorated so much, he was really struggling as was I so we had to get advice from NHS111 and ambulance services came out. They were great. They gave him a Nebuliser treatment as his oxygen levels were 89% and were very kind and patient. We explained why unless it was absolutely necessary we'd prefer to stay at home where he has seizure and wander alarms and we can cope better in the familiar surroundings and thankfully they listened. Coo's now added steroids, yet more antibiotics and now a Nebuliser to the mix. We're still battening down the hatches and battling through but I'm hopeful thing's have now peaked and tentatively optimistic we could be coming out the other side.

Who carers for the Carer?

Thankfully Coo has an SDS (Self Directed Support) care package in place so I no longer feel so alone when things get really scary for us both. I know help is there and I don't feel as if I'm drowning anymore but at times like these, in the quiet wee small hours, when sleep evades me I do worry for those carers still struggling on alone as I was for so many years. Just who carers for them?

Stay strong my friends as will I

((hugs)) Maz

Decisions, surgery, caring and coping...

Hi guys, I turned around to draw breath and January was all gone!
How have we faired? Not so well, already 2020 is proving challenging! So far it's been cancelled meetings, appointments galore and enforced time at home.
Treatment decisions...
Coo needed surgery. He wasn't suitable for a general anaesthetic due to all the sleep seizure activity - he has NFLE (Nocturnal Frontal Lobe Epilepsy), effectively sleep seizures so after discussion we opted for a spinal injection instead but in the end, on the day and after discussion with a very kindly surgeon, Coo opted to be brave and go with a local anaesthetic instead! Offt brave guy!
Surgery...

I gotta say, the staff were brilliant at Ayr Hospital, all the arrangements we'd asked for, additional space, the fact I'd need to stay close to keep him calm and also awake as he was stressed and shattered from the additional seizure activity the night before. The last thing we wanted was him left on his own, falling asleep and seizing on the ward!
I can only thank the ward staff, they took everything we said on board, really listened to us and the result was a far easier and less stressful experience for us both!
Well done getting it right for patients and carers NHS Ayrshire & Arran
Caring...

We got home, battened down the hatches and prepared for the night ahead's seizure activity. Just hoping he wouldn't bang around too much and burst any stitches and we'd cope OK until morning.
I think that's probably the worse bit for carers, it's the stress and the second guessing and the always needing to keep one step ahead in a crisis and just when you think you're home and dry? Bang, a big fat spanner in the works...Coo went into shock, he got the shakes, nausea and his temperature dropped to 35.4C and he felt really poorly.
I know from lots of experience when to call for NHS backup and this was one of those times.

Thankfully with some medical advice and some reassurance too, we coped at home - Coo did not want to go through yet another hospital admission, I wasn't keen either and I felt comfortable to monitor things and just wait it out.
A big cosy blanket, lot's of peace and quiet and a wee cuppa and slowly things stabilised again and we all lived to fight another day!

Caring is never easy that's for sure but it's never boring either! Here's hoping for a more settled February!
Keep strong
((hugs))
Maz x

Carers, Hospitals & Civic Awards grand night out...

Hi guys, what a time it's been here!
Ok, where to start...

Results of sorts..
Guess what? The results are in and I don't have Carpal Tunnel Syndrome at all - I have all the same symptoms but it 'aint Carpal Tunnel! The orthopaedic Surgeon says his opinion of December has not altered - it's a Rheumatoid flare up so hopefully I will have some news soon as after a failed referral...at last I will see a Rheumatologist this week! I'm at the point where I don't really care anymore which label is attached, I just want an end to all the pain everywhere and to be able to use my hands properly again.
All my usual coping mechanisms are out of reach. My sewing machine is now stowed in the cupboard out of sight - Jessie's half made Dora Explorer quilt is still sitting from October! - and my harp sits just waiting to be strummed again.
I guess I'm just a bit fed up of the whole business now but I've not lost all hope yet!
To cap it all, Coo is poorly, he's refused hospital so we're just keeping an eye on things and living quietly at home for now. The COPD (chronic obstructive pulmonary disease), has kicked in and his cough is awful, he has a temperature and yet another seizure increase too so between the two of us it's...happy days!
It's amazing what you can cope with when you have too but enough of that onto...
My grand night out! lol
It was on with the little black dress, the heely shoes and lots of lippy last week!

I was invited to our Provost Joan's 'Civic Pride Awards' ceremony. 
It's the one my wee 'Three Towns Carers 'won two years ago!
No pressure this time though as I was there as a guest so a night out, friendly company, a lovely dinner and the evening raised £20,000 for charities too!
What a great night and a happy wee diversion in what's been a difficult time!

At times like these, I'm so glad our SDS (Self Directed Support) is so flexible, it means when I have the chance to get out and enjoy something like this it's achievable but before SDS I'd have had to say thanks and decline. Just shows the difference proper support really can make!
The main thing is...We live to fight another day!

(((hugs)))
Maz x

When the Carer is ill...

Hi guys, I'm checking in and updating just what's been going on!
Firstly excuse my tardiness... Happy New Year!

We had a lovely Christmas Coo and I despite health struggles for us both (we spent Christmas eve in Glasgow's Southern General) and have since been living quietly at home.
I'm beginning to find out just what does happen when the Carer is ill and it's not easy that's for sure!
For one thing the caring continues, the person you care for doesn't just magically improve just because you find yourself on the other side of the caring equation for a change! That said, well, somehow you both try to adjust and then begins a process of prioritising, just what needs to be done and what can be left for another day and there in lies the rub!

So just what happened?

Okay, the Carpal Tunnel Syndrome developed and hurt...then made way for another syndrome of De Quervains and then made way for yet another and the long and the short of it is, after seven months I did get to see a surgeon who promptly called for more tests and threw the third and final diagnosis into the mix...
Rheumatiod Arthritis! 
My wrist, hand and arm is now totally swollen, it's been in splints and a sling since October and to top it all, I'm using more pain meds and steroids than I even thought possible and still it hurts!
I was hopeful this was a temporary issue but as time has continued and one months followed another, I'm beginning to feel this is not going away anytime soon. So what now?

Coo is coping with the changes, well, he's doing okay...he's stressed, struggling and trying so desperately to help me too, I guess we're kinda helping each other with care just in so many very differing ways!
Thankfully, we still have a supportive care package in place. The SDS (Self Directed Support), means we have some help, I'm still getting some sleep each week and a bit of time out too so it's kinda acting like the proverbial glue holding things together and keeping us going for now.

I've not totally given up the hope it'll all work out in the end - I guess it's the Carer spirit kicking in, that little bit of you that murmurs in the dark that everything will be okay.

Stay strong and use the supports you find around you as will I!
(((hugs)))
Maz x

Health issues, Carers & SDS...

Hi guys, it's been a very difficult week, Coo's is still poorly, we're waiting for blood and x-ray results and to cap it all I ended up in A&E myself.

I had numbness and tingle in my hand and face for over a week, I had no pain so wasn't that concerned but I caved into pressure from family, got a last minute cancellation and saw our doctor. Fully expecting a quick once over and maybe a prescription or even better an...it's fine don't worry...but no - I had to go to A&E and wait and wait!

I won't go into all the details here and now - I think that's a post for a stronger day- all I'll say is, the whole A&E experience fell very short of the quality of care I had expected. Waiting times so in excess of current guidelines, I could have cried in frustration! I'm not exactly sure what I'm going to do about this yet but that's a fight for another day, not today!

By contrast, hospital care itself, leaving aside the eight and a half hours wait in A&E, was caring, friendly and excellent quality and for that, I am so very thankful as it restored my faith a little. The staff we're open, friendly, tried to make my stay and as a Carer, the need for it to be over and me out of there as quickly as possible work but dear-oh-dear what an experience!

Thankfully our SDS (Self Directed Support) care package kicked in seamlessly, while I was admitted, Looby came to stay an extra night & day with Coo and this really meant, I wasn't worried so much about how things were faring at home and that so helped!

Thankfully my CT scan was clear, I need an MRI and I've agreed to have it done as an out-patient but for now I'm just trying to gather some strength, re-group and re-assess things a little.

I'm ok and we're coping!
(((hugs)))
Maz x

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!
(((hugs)))
Maz x

Provost for tea? No chance - A & E...

Hi guys, well this time we made it all the way to February before the first A & E visit of 2014!

Instead of a nice pot of tea and some cake with Provost Joan last Thursday at the civic awards meet and greet party, I ended up with drinks-machine hot chocolate at the local General Hospital A & E Dept and it looked nothing like this one I can assure you! lol

After a not too long wait,
Some prodding about and an x-ray...it's official!
Coo has broken a bone in his foot! What a pain and in more ways than one!
So...just what happened?
Well, firstly Coo knocked it in a seizure, ouch!
It really seemed ok, a bit sore mind you but no worse than the usual lumps and bumps of life living with Epilepsy so...we carried on as usual!
We had arranged to spend some time with our wee grand-daughter Jessica, just out for an hour in town.

Anyways, on a whim, we decided to pop in for a cuppa and to let wee Jessie have some fun in the new soft play area for pre-5's.
so far so good...but not for long!

Coo decided to 'help' Jessie but unfortunately he didn't help himself any...he fell over in the soft play and the was that - he finished the job! Bone broken, crutches and a whole lot of hassles!

We're back up at the hospital on Tuesday and hopefully it won't be too long until he's fully mobile again but I think he'll be steering well clear of those soft play places in future! lol

Onwards and upwards as they say!
(((hugs)))
Maz x

Hoping for more settled times...

Hi guys, it's been a bit of a struggle again here this week.

I've had to dig out my hard hat and flak jacket again as Coo is poorly! His meds change of a few months ago, has caused some on-going problems and he's struggling so very hard this week.

Coo's core drug Epanutin was discontinued earlier this year and after a trying time, phonecalls back and forth to both Epilepsy Scotland and our Doctor and Coo's Neurologist, we discovered the drug was being made by another company and under a different name - grey area if you ask me! Anyhow, we chased it down and moved on but Coo's struggled more than usual over the last few months and he is convinced it's down to a change in the drug manufacturing process!
Now, I'm not so sure, we've had a lot on our plate recently with baby Jessie's Hip Dysplasia and surgeries and Coo's been so stressed too so all that could be impacting on, what is, a very precariously balanced seizure struggle at best but on the other hand, who really knows? He might be right! All I know is, it sure has been a struggle - that's for sure!

What to do?

Well, firstly we need more blood work done, just to see exactly where those drug levels are sitting on the safe range and then we will see.

Our GP thinks the additional seizure activity is probably due to stress and it may well be but one things for sure, with Coo struggling as he is currently, we need some questions answered. The Neuro is probably best placed to answer them so I've a feeling another hospital run is on the cards for Coo and I.

I'll hope for more settled times for us all and I'll keep you posted!
(((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

NHS Review, Hip Dysplasia and Carers...

Hi guys, I've been busy again!
This time I went with some of my wee Carer Group to visit our NHS annual review and had a chance to ask questions and raise some points!

Well, not being the shy type and still adjusting to the very late diagnosis of baby Jessica's Hip Dysplasia and also the fact Minister for Public Health Michael Matheson, the Chief Executive and Chairman of Ayrshire and Arran NHS were all there, meant I decided to raise the issue.
I kinda had no choice really, it's important and if the information is not getting to families  who need it something is wrong!

I explained, four babies in every thousand are born with Hip Dysplasia, it's nobody's fault, it just happens but the quicker it's found and treated the better for these babies. I also explained, once Jessica was diagnosed, we went over all the health information the NHS gives to new parents and could not find any information there either! I asked them to take forward this point and include even just a paragragh on Hip Dysplasia symptoms, just what to look for would be good!

It's so important! If this condition is found early, there is seldom the need for surgery at all! The baby wears a brace or harness for a few weeks and in most cases it fixes on it's own but if it's missed, these wee ones need extensive and expensive surgeries, physio and rehab to try and rectify things as has happend with baby Jessie.

I'm pleased NHS Ayrshire and Arran are going to follow this up and I'm so glad I had the chance to speak to those who can address this issue properly and quickly too!

The other point I manged to raise was this one...

We had a crisis and needed emergency admissions seven years ago. Things did not work well and as a Carer and disabled person with complex difficulties we were not listened to at all. Coo's massive seizure activity could not be contained in a ward situation and as his care needs were so complex, it just didn't work and we were left feeling so very unsupported and alone! Last year, we needed another admission and we were both listened to and supported to enable, what turned out to be a positive and supported experience this time around! The changes we found then were heart warming and I wanted to share this positive experience and hope things continue improving too!

All-in-all the NHS review of our area had a lot of positives to share, there are things that need work but it was a positive meeting and I came away with a good feeling about how things are going!

If you get the chance to raise your points and question those who can change things, remember...deep breath and just go for it!
(((hugs)))
Maz x

Stress and shonky eyeballs...

Hi guys, remember that hospital visit I cancelled last month?
Sometimes, Carers health comes last...
Well, I did promised to do better and I did, kinda! I had to take Coo with me as Looby was still nursing baby Jessie and the chicken pox!
It's a long wait so it was stressfull and a hassle but we managed!
Bearing in mind, I wasn't having any eye problems what-so-ever and I didn't think the appointment was even necessary in the first place, it was the optician who referred me and I fully expected the specialist to say it was all fine - I was in for a bit of a shock!

I had drops that didn't sting and my eyes were probed and then more drops that did sting and a diagnosis of sorts!
Ok maybe the eye-ball jabs weren't as big as this wee nurse's but they kinda felt like it! lol

Turns out, the optician I saw month ago was doing his job correctly after all! It would appear the reason I kept failing the field view vision test is because my optic nerve is tilted and just what this means for me is anyone's guess!
I may even have been born this way and as I've never had proper vision in the effected section I just didn't know!
Well, what happens next?
Hospital visits every few months to check things are not deteriorating and wait and see!
Yet more stress to add to the rest - Joy!

I never rains but it pours and it seems to be in torrents at the moment! So I have a shonky eye-ball! I'm thinking along the lines...it's the same one I had yesterday and the same one I had last year and even last century! It's not bothering me at all so how bad can it be?
You know what? I'm just trying not to worry too much...I think I have enough on for now as it is!lol

What is it my granny always said?
What doesn't kill us, just makes us stronger! I'm sure she's right!

Onwards and upwards people!
Here's to keeping strong!
(((hugs)))
Maz x
***Just incase anyone else doesn't know - my daughter asked 'What exactly is shonky mum?
It's a word of two parts - being both shocking and wonky - pretty apt in the circumstances! lol
Glad that's cleared up then!
(((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

Another Neuro visit...

Hi guys, we've been at the hospital again...

A visit to Coo's Neurologist was on the cards this week.
He's a nice guy and tries to keep an eye on things with Coo and I and we're both glad to have him!
Although there's not much left for now to help with Coo's seizure activity, it's good to keep in touch with a specialist every so often and we learned this the hard way!  
Coo had major problems a few years ago and it took forever, (well it felt like forever!), around six months actually, to find a neuro to try and help... it was a very scary time for us both!

Anyways, there's nothing new to try drug-wise for Coo but non-the-less, it was a good visit.
Coo's neuro. listens and that's important! It's soul destroying to have a feeling of everything being so out of your control and at times, that's how it is for Coo. It's good he has someone who doesn't push too hard and is willing to progress things at Coo's pace, when he feels ready.

This time we've decided to wait until the spring, when there's less chance of colds and infections and then try to increase one of the AED's (anti-epilepsy drugs). It may help a little but as it's really cold here and already the time of year where Coo struggles most with increased seizure activity and infections, he wants to wait until spring and give things a better chance!
Even a little improvement would be great!

We're doing ok, the bloods came back and yet again the white cells are low so we're avoiding busy, public places and those dreaded coughs and sneezes!
I hope we get a dry day and can maybe get out on our bikes again - that would be nice!

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

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

Results and roller-coasters...

Hi guys, we've heard form the hospital re - Coo's op.
It's good news of sorts...I suppose - we're trying to be positive!
After all the problems and tests recently, Coo's consultant say's he's done all he can and will keep an eye on things but he now feels Coo's problems are probably drug related.
He has been on anti-covulsants (AED's) among other meds, for over 30 years so I suppose it could well be related - who knows!

The question now is, where does that leave Coo?
I guess it's a bit like his seizures - live with it.
Poor Coo, nothing is ever easy where he's concerned!
***and this week?
Well, more hospital appointments on the horizon - this time with the Neuro so...
I'll let you know how that goes!

 It's so true, the life of a Carer is never easy and it's never boring either! It's a bit of a roller-coaster ride at times and I guess you just gotta hold on tight and hang on for the ride!


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

Coo, Caring and Hospital too...

Hi guys, well, after a shaky start, things went ok at the hospital.

Coo was really worried and it was a very difficult day to begin with. While we were waiting, he admitted he very nearly backed out and refused to go through with things. He calmed down a bit and we got through the pre-op session, where he told the nurses he was terrified he'd seize during the operation.
It turns out the anaesthetist had concerns too and in the end it was agreed, Coo was not getting a general anaesthetic at all, it was too risky for him, so he had an epidural spinal injection instead!
   I think everyone was relieved and Coo was delighted at this turn of events as if he didn't need to be asleep well he wouldn't have any seizures would he! We knew there were still risks but it was by far the best option - thank goodness it was possible as I doubt this op would have been otherwise possible!
Now we'll just need to wait for the results!

Never mind...
In the mean time as it's nice and sunny here...we're keeping ourselves busy pottering in the garden!
I love this time of year!


The sunshine sure helps you forget your worries for a wee while and getting back to nature is always good for you, well it works for me anyways! lol

I hope things are as sunny for you too!
(((hugs)))
Maz x

Sunshiney Day...

Hi guys, guess what?
The sunshine has made a comeback - woo hoo!
It's been very cold and wet here lately and I wondered if the weather would ever pick up!
It has...Today's been lovely!

I always think grey days make for grey moods. It's amazing, isn't it, how a little sunshine can lightened your mood and make everything just that little bit easier to manage!

We're still a little stressed this week, with our hospital stay still looming. There's lot's of seizures around but we're coping and a little sunshine has raised a smile for us both today - long may it continue! lol

If this sunny spell keeps up, we may even venture into the garden and at last make a start on sorting it out! lol

Happy Days!
I hope you're having some sunnier times too!
(((hugs)))
Maz x

Hassles in Carer land...

Hi Guys, things have moved on a little with Coo's proposed treatment! We've had some word from the hospital at last!

They've found an anaesthetist who has agreed to treat Coo - thank goodness for that! It's all arranged, he'll get a side room and as before, we'll both go into hospital in little over a week.
I'm glad this has been resolved as we've been a bit stressed wondering "will they-won't they" so at least now we know!

With even more seizure activity due to all the added stress,
I must admit I'll be glad to see this latest hassle resolved too!
Let's hope it's nothing major or we'll be back to square one...again!
Enough of that...let's keep positive here!
Fingers crossed it's a fairly simple thing to sort and then we can all move on!
Well, here's hoping anyways - wish us luck!

 In other news.. Happy Mothers Day!

I've been really lucky this year!
Stevie brought Looby and our wee grand-daughter home for a wee holiday this week so I got to spend Mothers Day with my lovely Looby and the baby! Now that was an unexpected treat! Coo and I have had great fun and had lot's of cuddles with them both! lol

I can't believe how much Jessica's grown she's now 6 weeks old!

She's a wee cutie-pie!

Well I think so but I guess most granny's will think their grand-babies are just gorgeous won't they? LOL

I will miss them, when they go home, luckily it's not for long!

Things sure are feeling a bit more positive here this week and I'm hoping they're just as good for you, where you are too!
(((hugs)))
Maz x