Tuesday, 28 February 2017

One in a Million (Or Maybe Two!)

When I was born I was a bit of a late addition, my brothers were already in their teens. Not only was an extra surprise, I was a girl and my Mum and Dad were thrilled. So were my brothers (I think!)

You could say they thought I was one in a million!

My life went on and I got married and had two lovely children. I always wanted more but it wasn't to be and I spent a lot of my life as a single mum.

When I was much older I met my current husband and we agreed to try for a baby together. My other children were already teenagers and I was getting on a bit so we didn't know if it would happen but we were willing to try.

We tried for over two years, then I had a very difficult pregnancy where we thought we were going to lose our baby a few times. But she came into the world just a couple of weeks early and we were overjoyed. She was one in a million, our little miracle baby.

Having Star kick started my fertility and she was soon joined by two more siblings.

When Star was very young we knew that something wasn't right, she seemed to be in pain a lot with her joints, especially her knees. We had her checked over and it turned out she had hyper mobility problems which was the cause of her pain. When she was older she woke one morning with a twisted neck and it turned into a major problem which took 18 months and five trips to the operating theatre to fix. It turned out that she has a rare condition called Elhers Danlos Syndrome which means her ligaments are very lax and she is prone to subluxations. She doesn't actually have a definate diagnosis yet as there are many forms of EDS and the geneticist believes that she may also have another rare condition, Marfans Syndrome. We don't know what the future holds for our little girl, but we do know that she really is one in a million and we will do what we can to make life good for her.

Last January I joined my daughter in becoming one in a million. In fact the condition I have is probably less than one in a million world wide, and I have an even rarer strain of the condition. I have Progressive Encephalomyelitis with Rigidity and Myoclonus which a form of Stiff Person Syndrome. It started suddenly and no-one has any idea why. Like Star, I have no idea what my future may hold but we carry on.

Research is so important with rare diseases. Cures and treatments can be found and those suffering can live fairly normal lives. With awareness we can avoid getting the wrong treatment. Star was treated wrong when her neck subluxed making it much worse. I have not been receiving the correct treatment for a year because my condition was misdiagnosed. A little support can go a long way, so that's why I'm sharing our story today on Rare Disease Day 2017.

If you wish to learn more about rare diseases and how you can help spread awareness please click the poster and share what you can.

Thank you, from a mum in a million and her little Star.




RachelSwirl

Sunday, 26 February 2017

Why Does Half Term Go By So Quickly?

It's now Saturday affernoon and on Monday the kids will be going back to school after half term.
I love having them home, we can chill out, we don't have to rush in the morning, we can do lots of things together.

So why do I feel like we've just wasted a week?

Last weekend we went out both Saturday and Sunday. We browsed the shops on Saturday and bought some new craft supplies. Then on Sunday we spent the whole day at Cosford Royal Airforce museum.

But, we haven't been out since. Monday the weather was kind but the weekend had taken it's toll and I was in too much pain to go out. The Little Man and his big brother played in the garden for over an hour which was nice. The girls stayed in all day but they didn't mind.

The rest of the week has passed so quickly and I was feeling upset that we hadn't achieved much. Maybe that's not a bad thing. I mean the kids are stuck to a routine all week at school, they are out every day and busy all the time. Maybe, it's okay just to chill out and not do much for a week?

Then I got to thinking of the things we had done in the week. We baked a lovely cake for Daddy for his birthday. In fact Boo did most of the work on this cake all by herself!

chocolate orange cake


We also baked chocolate cookies, you can never have enough cookies in the house!

chocolate cookies


The kids had their arts and crafts stuff out and instead of telling them what to do I left them to just use their imaginations and create what they wanted. Boo made a book, and Star and the Little Man made some lovely art work.

I also bought the kids some new notebooks when we went out last Saturday and they have been filling them up with words and pictures all week.

We have had some lovely books to review this week and the kids have enjoyed doing lots of reading. Boo has also been learning Spanish with a book and audio. I reckon she'll pick it up really quick like this.

learning spanish with audio and book


We had some books from Lonely Planet Kids which were full of stickers and activities and the kids have spent ages filling them in, they are  so much fun.

sticker book fun from lonely planet kids


We've watched movies, played board games, and the kids have played with their toys.

Star has been trying to make slime at every opportunity after watching YouTube videos, she's not had good success yet but I've just ordered some stuff online for her so watch this space.

Today we are back to one of my childhood fun activities and making some pom poms!

making pom poms


So, is it bad that we only had a couple of days out and have spent the week indoors?

Maybe, if it's nicer weather tomorrow we can go out and blow away a few cobwebs. I don't like staying in all the time but if the kids are happy and occupied then I suppose it's okay.



Debs Random WritingsThe Ordinary Moments


Pink Pear Bear

My Sunday Photo 25th February 2017

Consolidated PBY-6A Catalina

If you've been reading my blog this week you probably already know that we actually made it to Cosford Royal Air Force Museum for Graham's birthday treat. I guess it was the highlight of our week just being able to get out. It was Graham's first time driving on the motorway too and he was really good. Thankfully, Cosford is really easy to get to and only just over 30 miles from home.

We had a lovely day walking around inside and out looking at all the plane and I think between us we took about 200 photos. 

It was hard to choose one for today but this one seems to have slipped the net everywhere else I've including photos (even our YouTube video!) So I have decided to put it here simply because I like the orange nose and tail. 

The museum is fantastic for plane lovers, but not so good for those who like good photos because inside the hangers everything is really crammed in and you can't seem to get a good photo of one plane without getting another one in the way. The planes outside make better photos I think.

Hello to everyone passing by My Sunday Photo and My Sunday Snap Linkies. I'd just like you to know that I visit you all back and pin a lot of the lovely photos I see on my Sunday Photo Pinterest board.





Photalife

Sunday Snap

Friday, 24 February 2017

My Top Ten Pancakes for Pancake Day!

I love pancake day, I love pancakes. In fact, why wait until pancake day, we don't!

I've selected a few of my favourite pancake recipes to share with you. If you want more you can check out my Pinterest Pancake board! 


10: Bacon Pancakes!

Now, I'd never really thought about bacon pancakes until I saw them on my favourite animation Adventure time...so here's Jake makin' Bacon Pancakes!



And it's really a thing! Bacon with Pancakes and Maple Syrup Recipe
Probably best served for breakfast, unless you are a bacon addict!

bacon pancakes


9. For the love of Traditional - Basic Pancake Recipe
Fill how you like!

traditional english pancakes


8. Let's hear it for the Vegans, totally free from eggs, dairy, nuts and gluten! Fluffiest Vegan Pancakes
Such a gorgeous photo too!

vegan pancakes with figss

7. One of my own, Very Grown-Up Pancakes for loves of Black Forest gateaux.
My photo is bad, but the pancakes were good!

chocolate cherry and cream pancakes



6. Raspberries and Cream, what a delightful combination!

raspberry and cream pancakes

And a pan to cook them in -

crepe pan from lakeland
crepe pan from Lakeland  £18.99

5. Japanese Style Pancakes. My kind of pancakes are generally flat, although I do like drop pancakes, or American style pancakes too. These are really different as they are big and fluffy.

fluffy japanese pancakes

4. Staying with Japan but going savoury, I'm a huge fan of Okonomiyaki, or cabbage pancakes.


japanese okonomiyaki pancakes


3. Creme Egg Pancake Stack. Why is this not number 1, well, simply because I don't think I'd be able to manage to eat the entire stack and that would upset me!

creme egg pancake stack


2. Pancake Art! I love it. I can't do it myself, but I love to see those little videos of how they are done and I will, one day, be brave enough to try. Take a look at this fantastic 3D Millenium Falcon.

millenium falcon 3D pancake

1. Our favourite pancakes of all time have to be banana and Nutella. We can't get enough of them.

chocolate and banana pancake

Whisk from Lakeland £6.49


I hope you have enjoyed my top ten pancakes, I'd love to know your favourite in the comments.

pin for later
pin for later

Disclosure: This post contains affiliate links

Flying - Word of the Week


This week my word is flying, but I've not actually taken to the air!

Last weekend we managed a trip to the Royal Air Force Museum in Cosford and saw so many aeroplanes. The kids enjoyed the Fun n Flight area where they learned all about the science of flying.
They also enjoyed the Cuban Missile Crisis film where they learned about nuclear war, very scary stuff!

Graham enjoyed everything because he has a passion for aeroplanes, in particular those with a lot of history, like war planes.

This week has been half term and apart from the trip to Cosford we had a trip to our local craft shop and bought a whole load of craft items. The kids have had a lot of fun with their art and craft and the week has just flown by. Star and her Dad even made an aeroplane out of plasticine.



The Little Man had a fun hour in the back garden with his older brother, there is actually a 22 year age gap so you can imagine they don't play together very often. However, the sun came out and off they went to play with the parachute toy we'd bought from the museum and they were also flying a rocket! 

Finally, how can I miss Storm Doris who woke me up yesterday morning at 5am. I know we didn't get as much rain as some but the wind was pretty bad and sent everything flying in our back garden. We didn't dare venture out, although Graham did and he saw many fallen trees. 

Now it's the weekend which I'm sure will fly by too and the kids will be back at school. I like the peace and quiet for a few hours a day, but I also like having them around and not having to rush about in the morning. So I'll be hoping the time flies by until Easter, which has to be my favourite holiday of the year.

How has your week been?


The Reading Residence

Wednesday, 22 February 2017

Cosford - Royal Air Force Museum

Last weekend Graham had a special birthday. I gave him lots of options of celebrating but his choice was to visit Cosford Aeroplane Museum. We've been there once before  a few years ago and he was itching to return. He's always loved aeroplanes, especially ones with history.

Cosford is located in Shropshire which is only about an hour away from us. You can get to it just off the M54. Admission is free! There are three hangers to explore filled with over 70 aircraft of importance. There is also an art gallery, a simulator ride and 4D experience. The kids favourite place was the Fun 'n' Flight area packed with fun and educational experiments based around the science of flight.

We picked a really nice day to visit which meant we could spend time looking at the aeroplanes outside as well as in the hangers.

The overall family favourite was the cold war exhibition, you can see Britains three V-bombers, the Vulcan, the Victor and the Valiant under one roof. There were also areas where you could watch film about the Cold War and the kids were captivated by the story of the Cuban Missile Crisis.

I arrived in my wheelchair but they had motorised scooters available so I borrowed one. This meant that the husband could look around and do his own thing without pushing me around. The place was easy to get around too. Only one hanger was on two levels and there were lifts available.

I've made a little video of our day to show you, it would be lovely if you could give it like on You Tube where we'd love for you to join us.


We took many photos, so I've made some collages to share with you.







Country Kids
Twin Mummy and Daddy

The School Residential Trip

Last week before we broke up from school the whole of Star's school year were invited to a residential trip at a place called Kingswood.

She came home so excited to tell us about the trip but had failed to understand that it meant staying away from home. She wanted to go, but not stay.

I did write a detailed post on why we finally not to let her go on my Zebra Hooves blog which you can read here if you wish. Apart from her autism, Star also has physical problems and a condition, Elhers Danlos Syndrome, which means her joints are easy to sublux and she gets a lot of pain.

The activities at Kingswood were mostly unsuitable for her, she has never stayed away from home apart from with family and she also has the other issue that I don't want to mention here, but it would have been a big problem if she was away from home for three days.

When the trip time came, Star was worried about what would happen to her while the rest of her school year were away. There were seven children in total that were not going and the school had not told us what they were going to do. We were all a little anxious.

Then the school phoned and said that they were willing to take the seven children each day and bring them home at the end of the school. It seemed a great solution and Star was more than willing to go.

Of course, we still had issues with the fact that she wouldn't be able to take part in the activities there anyway, but as she was so keen to go we decided to let her.

The first day she came back and was fairly tired but she'd not really done anything. She'd watched the other children climb walls, and go on the zipwire, and had enjoyed being a spectator but it was sad that she couldn't take part.

Then the school asked if she wanted to stay for the last night. They had a big party planned and Star was really excited about it all. So, we packed her a bag for one night and she was off. I was so proud of her, it was not a decision taken lightly by any of us but as it was only for one night we thought she would be okay.

We missed her so much at home and could only wait and see how she got on.

She came back the next afternoon really tired and in pain, she hadn't enjoyed the party and barely had any sleep. But, she'd managed to stay away and look after herself and for that we are really, really proud of her.

She can truly be a Star sometimes!




“Our

 


The Bee - A Boolino Book Review

I love being a Boolino Book reviewer, it means we get lots of lovely books to read and I don't believe you can ever have enough books!

The latest book we were sent was The Bee and it was perfect for the Little Man.
The Bee is from My First Discoveries, Moonlight Publishin, and delves into the life of bees and how they live and behave.


First Impressions

The book is hardback with card pages. It is a spiral bound book but the rings are covered on the outside. It is sturdy and will last well. The illustrations, by Ute Fuhr and Raoul Sautai are detailed and colourful and will keep the young reader fascinated. There are also some transparent pages which reveal hidden surprises, like the inside of a beehive, or what the bee does once inside a flower.

Readability

Aimed at 4-8 years my Little Man falls in the middle at 6 years. He read the book to me fairly easily with only a couple of word he stumbled on. He is a very good reader though and the book would probably have to be read to  younger readers. The text is written to give you short bursts of information and is written around the illustrations which take priority.



The Story

This is a non-fiction book which gives lots of information about bees, how they collect their pollen and build their hives. Also, how they communicate with each other and look after one another. It gives a really nice introduction of the life of this little insect. There is lots to learn but it's kept interesting and the illustrations help to get the message across. 

Our Verdict

The illustrations make this book special and the Little Man really liked the addition of the transparent pages. It was a delightful little book to look at and we learned a lot about bees. 

You can buy the book from Boolino for £6.29.







Read With Me

Laura's Lovely Blog


Disclosure: We were sent this book for the purpose of this review, all thoughts and opinions are purely my own and I like to give an honest opinion.

Monday, 20 February 2017

Rattan Direct 5 Drawer Rustic Storage Rack Review

I was asked if I'd like to review a storage rack from Rattan Direct and as you can never have enough storage I said yes. I chose the 5 Drawer Rustic Brown Rattan Storage Rack.

rattan direct 5 drawer storage rack

Rattan Direct are leading rattan furniture suppliers in the UK. They pride themselves on offering designer lifestyle furniture at direct prices. They offer unique designs in a range of colours that are maintenance free. The furniture is suitable for conservatories and gardens and there is so much to choose from.

When my rack arrived it required no assembly, much to my husband's delight. We just took it from the box and removed the wrapping paper and it was ready.

opening the ratten direct storage rack

I was immediately impressed with the quality. The rack is solid wood and looks and feels sturdy. The finish was rustic, which was expected and it was really nice looking.

rattan direct rustic wood storage rack

The drawers are well constructed and a really good size. You would be able to store loads in these. My first idea was to keep it in the conservatory and fill it with craft items.

rattan direct rustic wood storage rack

However, despite my craft needs we have decided that this would make a perfect storage rack on our landing. It's strong and sturdy enough to be used outside or in the conservatory but it's also a beautiful piece of furniture which I would be happy to have on display anywhere in the home.

rattan direct rustic wood storage rack with drawer open


















I have fallen in love with this storage rack. It wasn't instant as it is a lot more rustic than the type of furniture that I would normally buy. But, the quality and sturdiness of this rack has won me over and it truly is a beautiful piece.

It's a great size too, Height: 126cm, Depth: 34cm, Width 52cm.
The recommended retail price is £298 but you can buy this storage rack from Rattan Direct for £149 and delivery is free.

rattan direct rustic wood storage rack with label showing






















I would recommend this storage rack from Rattan Direct because it is beautifully made, very useful and would look good anywhere.
Family Fever



Disclosure: I received the Rattan Direct Rustic Storage Rack for the purpose of this review. My thoughts and description are as always my own and completely honest.




A little Note About Positive Reviews on Raisie Bay



Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I've also seen negative feedback with say things like, I had to return this item because the colour did not suit me...is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I've loved. If I don't love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It's always the latter.

This is my blog, my place and I'll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.
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