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

Disappointed.com...come on NHS!

Hi guys, I'm on the case again!
Remember when I posted recently about raising an issue at our NHS annual review? It was regarding the lack of information from NHS on Hip Dysplasia.

Well...I'm disappointed.com!
The NHS people have not bothered to contact me or update on this issue so...I decided to give them a wee reminder in the hope they will move quicker and in the right direction!

First I contacted Public Health Minister Michael Matheson, (he hosted the review!), just to let him know, I had not yet had any further contact with NHS. Then I emailed the only Health board contact I had and asked for some help tracking down just whom should I be talking with - I'm nothing if not resourceful!

I hope they are taking this issue seriously as with four in every thousand babies born with Hip Dysplasia that's a lot of wee people with hip problems that need checked and if they're like baby Jessie and missed at the start, parents need to know the symptoms and just what to look for!

It would be nice to hear from them soon, one thing's for sure...
I'm not giving up - it's just too important!



Remember just like their logo says the NHS belongs to us all!
If you come across something you're not happy with, particularly if by intervening you can save someone else from pain, take a deep breath and...challenge, challenge, challenge!
Keep strong,
(((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

Coping, stressing and finding a way...

Hi guys, I've been dreading the next few weeks arriving and here they are upon us!
Baby Jessie's surgery is fast approaching and it's been a struggle. We have a seizure increase again and Coo's been so very poorly this week. If I'm honest, it's not really surprising, the week before Jessie's last surgery, was just the same. 
Stress is a major trigger for Coo and always results in increased seizure activity and a bit of a struggle but the rescue meds (Midazolam) are in place and we're coping.

What to do?
Well, we could stay home and hole up and try to ride things out - we've done that before...often! or we could try to diffuse things a little with a change of scene and hope they will settle a little.

I chose to opt for the latter this time and decided to book a couple of tickets to a show in the Kings Theatre Glasgow  Coo is quite comfortable visiting there now so it's a good choice and with a stop over at the Travelodge, it should be managable!

Everything you do, if you have disabilities, needs additional planning, things able bodied people just take for granted need careful planning! You always gotta stay one step ahead and have an answer to all the 'what if's' but one thing I've learned is...if you get bogged down in all the negatives you never manage to soar with the positive things in life anymore!

I guess we all find a way, we have to...there's a big difference between existing and living!

Our SDS (Self Directed Support), has really helped us find the positives again and that's been the most valuable lesson of all!

 

 

Why was I so afraid to make the switch and try directing our own support? I guess we all worry about the unknown and don't want to risk what little support we have, incase it all goes wrong!

Looking back, it really was the best decision, scary at the time but so very worth it in the end!
Don't be afraid of SDS if you get the chance to try it, reach out and grab with both hands!
(((hugs)))
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

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