Thursday 5 December 2019

Zippo's Circus At Winter Wonderland

Last weekend we were invited along to Winter Wonderland in Hyde Park to enjoy a day out which included a visit to Zippo's Circus. I hadn't been to the circus for as long as I can remember and this was Eliot's first time so I was looking forward to it!
Eliot, the ringmaster & some of the performers!
 It didn't disappoint at all and one of my favourite things about the show is that it lasts just under an hour meaning its perfect for families! I'm sure we've all had the experience of young tots wanting to make an escape but the show was just the right length!
Each of the acts were brilliant in their own way and some of the performances were just unbelievably talented!
Two sisters from Norfolk performed amazing acrobatics together mid air who earned lots of gasps and applause from the audience. 
Khametov's high wire troupe really had me on the edge of my seat with their act! I was in awe of the skill and amazed at their performance.
The unicycle act from Russia made riding a single wheeled bike look easy peasy and again left the audience mesmerised.
One of my favourite acts from the show was the roller skating duo, New Revolution from Cuba. I mean the speed they skated and the moves they made were insane! 

As well as all those acts there's a talented juggler and  the very funny Emillion whose comic timing was absolutely spot on! He made me laugh when he got some of the audience involved!
We all enjoyed the show and I definitely recommend watching if you're heading to Winter Wonderland this festive season! Zippos Christmas Circus is at Hyde Park Winter Wonderland  until 5th January 2020. Tickets should be pre-booked to avoid disappointment!

As well as Zippo's Circus there is a Mr Men and Little Miss show in the mornings, again another great show for families!

As well as some great family shows there is obviously the rest of Winter Wonderland to enjoy including rides, food and stalls!

There's plenty of family and toddler friendly rides as well as those for thrill seekers so plenty to keep everyone happy!

We also visited the 'Magical Ice Kingdom, this year the theme is 'A Christmas Carol'. This is definitely worth a visit but wrap up warm as it's very cold!

I'm not sharing too many photos of the ice kingdom as I don't want to give too much away but you can see how exquisite the sculptures are! The detail and craftsmanship is outstanding! There's even a slide made out of ice which Eliot had lots of fun on!

I certainly recommend for a family day out, there's plenty to see and do to keep all age groups entertained!

Have you visited Winter Wonderland?

* We were gifted tickets to experience what was to offer at Winter Wonderland 2019, all opinions are my own

Tuesday 16 July 2019

Carter's Steam Fair

 At the weekend we enjoyed a family afternoon at Carter's Steam Fair when they visited town for a few days. Carter's is a unique fair with rides that the Carter family have collected and restored originating from the 1890's to the 1960's.
 It did feel like you'd taken a step back in time, from the rides to the music I really felt that there was a sense of going back in history!
On the carousel
One of my favourite things as a child was to go to the fair when one came into a local town. These days I'm not keen on the 'usual' fairs that appear during the holidays but Carter's is not your 'usual' fair and the atmosphere felt completely different!
Each and every ride is beautifully painted just as it may have been all those years ago when it made its' debut, keeping that sense of history and originality.
When we arrived at Carter's Eliot was so excited he couldn't decide which ride to go on first! There were plenty of rides for younger children to enjoy and that are suitable for toddlers. He was able to go on many alone but also gave some a try that he wanted to go on with a grown up! 
There are also a couple of rides that aim to please those that enjoy white knuckle rides including the 'Victory Dive Bomber' which is the only remaining travelling Dive Bomber!

See the Dive Bomber in action?!
As well as rides to enjoy Carter's also have plenty of fairground games to play including 'Hook A Duck' (the traditional fairground game), a coconut shy and even an arcade full of vintage slot machines!
Hooking one of those ducks!
 As well as 'Hook A Duck' Eliot had a go on the 'test your strength' traditional 'Striker' game. There were three sizes to cater for different ages and strengths, giving the opportunity for all to have a go!
Candy floss at eh coconut shy

Entry to Carter's Steam Fair is free, tokens are required to be purchased to go on the rides. These can be purchased online before you visit or at the machines or token booths at the fair. To get the best value it's a good idea to buy online as Carter's give extra ride passes! 
Each token is worth 50p and the number of tokens needed for each ride varies. Most of the toddler rides require four tokens, whilst family or thrill rides require five or six. You also need tokens to play the games too which cost five tokens.
We had such an enjoyable visit to Carter's and certainly recommend a visit for a family afternoon/ evening out. To check if Carters are coming to a town near you have a look at their online tour dates.
They are back at a local town in September and we already have it booked in on the calendar!

*We received ride passes & refreshment vouchers in exchange for our honest views. All opinions are my own!

Thursday 28 February 2019

Rare Disease Day 2019 - A Little Bit About Tuberous Sclerosis

Today is Rare Disease day across the world which I wrote my first post about last year!

Rare Disease Day aims to raise awareness of rare conditions and how they affect individuals and their families. 1 in 20 people will develop a rare disease in their life so that's why it is important that more people become aware.

50% of rare diseases affect children.

Nola is one of those children. She has Tuberous Sclerosis Complex (TS/TSC) which looking at current figures, affects 1 in 25,000 to 1 in 11,300 people in Europe.

It is present from birth but some individuals do not learn that they have TS until they are adults. Symptoms differ from person to person as does the severity of how it affects them.
Tuberous Sclerosis causes benign tumours in different parts of the body, the most common to be affected are:

The brain, eyes, lungs, heart, kidneys and skin.

If you have them, you are born with the tumours in your brain, heart and eyes (possibly elsewhere but I'm not 100%) in other organs the tumours can develop later on. The good news about tumours in the heart is that they usually shrink as you get older. This has happened in Nola, a second ECG revealed that the rhabdomyomas on her heart had decreased in size.

At present Nola also has tumours in her left eye which fortunately don't affect her vision at the moment. She also has multiple growths in and on her brain, these unfortunately do affect her and she has epilepsy which on the whole has been controlled by medication. Unfortunately she has recently relapsed in a rare type of seizure called infantile spasms.

Some people with TS lead a next to 'normal' life whilst others are severely affected and need life long care.
TS is caused by mutations in either the TSC1 or TSC2 gene which play a part in determining cell growth. The mutations cause uncontrolled growth which results in multiple tumours in/on the body.

There are treatments for the various areas that can be affected by TS, sadly they do not always work for every patient.

So there are a few facts about Tuberous Sclerosis on Rare Disease Day 2019.

Wednesday 19 December 2018

Nola's Journey-Diagnosis Tuberous Sclerosis

TUBEROUS SCLEROSIS, not to be confused with Tuberculosis, as I did when I was handed a discharge letter after Nola's first MRI scan on 19th December 2017. They may as well have handed me an atomic bomb, our world was about to crumble into pieces.

Nola and I had arrived on the children's ward at 8am that morning ready for her MRI scan which had been scheduled after she'd been admitted to hospital earlier in the month (I will be writing about how we got to this point in other posts) and an EEG showed abnormal activity in the brain.
The anaesthetist came to see us and talked through procedure, risks etc and presented the consent form that I needed to sign.

I was hoping my three month old would be first on the list for the MRI as she was being starved due to needing general anaesthetic. I was anxious when a toddler who I assume had been an inpatient was taken down first. I expected Nola to be screaming the ward down as she hadn't had any milk for hours. She surprised me though and was bloody amazing!

Fortunately Nola was next on the MRI list and we were walked down to the unit by one of the lovely play workers. There were a team of people waiting for her, they introduced themselves and then it was time to lay Nola on the bed ready to be anaesthetised. They had explained that I could be with Nola whilst they used the gas to put her to sleep, then I would need to leave. I remember holding back the tears asI stroked her face and then had to leave her. I was anxious about her being under GA. I had been told it would be about half an hour to get the images needed from the MRI so I headed back to the ward and made myself a coffee.
About twenty minutes later I went back down to the MRI suite and took a seat in their waiting area. The time went past half an hour and I wondered why they seemed to be taking longer with Nola. Now I presume it must have been because they struggled to get a cannula in for the GA or because they had found something and were ensuring they had all the images they needed.
My brave girl!
Eventually a nurse came to get me and took me through to the recovery area where Nola was a very unhappy bunny. Fortunately I had brought her milk down with me and was able to give her her bottle. 
One of the staff then said we would be going straight through to ultrasound to scan her kidneys as they had 'possibly' picked something up.
I had to sit on one of the wheeled transport chairs holding Nola while we were pushed through an incredibly busy ultrasound unit and straight into the room to be scanned. I wasn't told anything at this point and we were sent back to the ward where Nola needed to be observed for a couple of hours after the GA.
Cannula in the foot :(
I watched the family who had gone for the MRI first go home after the observation period so was more than hopeful that Nola and I would be escaping pretty soon. The couple of hours passed and I asked the nurse who was looking after us if we would be able to go soon. She wasn't really sure what was happening. Eventually the consultant who had admitted her a few weeks earlier and referred her for investigations came to see us. I can't recall the exact conversation but do vividly remember the words 'they did find something'. She possibly told me at this stage the MRI images had been sent over to Addenbrookes for the paediatric neurology team to look over.
The hours passed and I felt frustrated being stuck on the ward with no further information. There was a teenager in the next bed that had been stabbed and had been transferred over from another hospital That family were feeling frustrated too, they were still waiting for a doctor to come and see them. To be fair to the staff it was incredibly busy and I know they had to send patients to another hospital as the children's ward was full to capacity and they had no beds to admit anyone else.

Finally a registrar came to see me, she said they had found growths in Nola's brain. She also said they were benign and 'nothing to worry about' (I quote those words exactly!) I asked if she would need to have an operation to remove them but she said that wouldn't be happening and the team at Addenbrookes had seen the images. She said we were able to go home and said she would tell her nurse to remove Nola's cannula. 
We were still there for over an  hour waiting. The same Dr came back and gave me Nola's discharge letter which I opened and read. It obviously contained lots of medical jargon, much I didn't have a clue about. Then I read the phrase 'findings highly suspicious of tuberous sclerosis'. I read in disbelief as my brain turned it into something I understood, tuberculosis. How on earth could she have that? She'd had the BCG jab at a couple of weeks old and how on earth could the growths in her brain have anything to do with her longs. Then I stopped myself and read it again, this time it was clear it was something else, something I had never heard of. So I did what we all do and typed it into Google. I read the definition etc on the NHS website  but the enormity of this 'highly suspicious' diagnosis did not sink in just then. I was cross though, I was cross I had been handed a letter with a life changing highly likely diagnosis and no one had spoken talked me through it. I did message my old boss (a paediatric consultant) and sent her a picture of the letter, I asked her what it meant and what I should be asking. She replied asking me if anyone had spoken to me about it and that she'd really prefer to talk to me on the phone. It wasn't until Christmas Eve I actually got to have a proper conversation with her.

In the weeks/months that followed we had lots of various appointments with Nola. Finally in May this year her genetics doctor rang me and confirmed that her genetic blood test was positive for Tuberous Sclerosis. All the investigations running up to this phone call only pointed towards TS so I already knew but it was relief to have a certain diagnosis.

Do keep an eye out for more posts on Nola's Journey that will be coming soon!

Thursday 13 December 2018

Saturday Lunch At A Sizzling Pub & Grill

A couple of weekends ago we went to The Top Of The World Sizzling Pub & Grill for a spot of lunch. We've visited different sizzling pubs before, one of their highlights is the variety of offers. I assume the offers may differ from venue to venue but there always seems to be an option to take advantage of. I am a fan of the 'Kids eat for £1' Monday to Friday between 3pm-7pm, a good one with the Christmas holidays coming up if you've had enough of slaving away in the kitchen!
 We visited on a Saturday afternoon when a football match was on, the bar area was fairly busy with football fans but there was plenty of room at the tables. We sat down in quiet area and browsed the menu. There is a selection of starters the that you can choose three from for £10. We went for some of  our favourite starters, nachos, loaded potato skins and beer battered salt and pepper mushrooms. 
They arrived shortly after we'd placed our order. They loaded potato skins and mushrooms were nice and hot and we enjoyed them I personally believe you can never go wrong with nachos, cheese, sour cream and guacamole! They're always a winner for me!
 For the main course we both ordered steak and Eliot opted for the quorn nuggets with chips and peas which he clearly enjoyed as he cleared his plate! Another great part of the kids menu is that there is a choice of dishes for under and over 5's making it easy for you or the littles to choose either by preference or appetite.
I had ordered the 8oz sirloin steak which was served on a skillet with onions, a mushroom and a tomato. I like my steak to be 'well done' which it mostly was but it was still a little pink in the centre. The chips were nice and chunky and served hot. Overall I enjoyed my main and there was nothing I could fault about it.
The other main meal that was ordered was a surf and turf which is usually a 5oz sirloin steak with six pieces of scampi. There was an option to upgrade the steak for a larger one at an extra cost. This steak was ordered to be cooked 'medium' which it was and again it was served on skillet with onions, tomato and mushroom as well as a slice of lemon for the scampi. Like my main, there was no faults with this one.

 Finally it was dessert time and Eliot had made sure he put his order in when we had ordered the starters and mains! He ordered a 'Build your own sundae' which came with vanilla ice cream, chocolate buttons, chocolate sprinkles, chocolate sauce and strawberries. He was very excited about pudding, he always loves being able to do his own thing so was very happy! 
 My decision on dessert was not as quick as Eliot's, I had a good look over the options and was torn in-between choosing a sundae or the Belgian chocolate brownie. I opted for the brownie and was pleased with my choice, it was lovely, warm, and chocolate-tie. Just the sweet treat I needed!

 The other dessert we ordered was Rolo Cheesecake, sounds amazing! Now wondering why I didn't have a sneaky little taste but sure it was because I was full. It was another well received pudding and not much was left over! If cheesecake is your favourite type of pudding an you love Rolos, this sounds like the perfect dessert!

Overall we had an enjoyable lunch at The Top Of The World Sizzling Pub and Grill, there was nothing to fault about the food we ordered. I feel that the atmosphere was probably  different to what it is usually like due to the football being on. Not that it had been an issue for us but I had the feeling it would have felt completely different without a football match being shown.

Be sure to check out the menu and find your nearest Sizzling Pub & Grill, and don't forget to sign up to get £5 of your bill!

*We received a complimentary meal in exchange for a review. All views are my own

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