I'm one in a million!

Today marks Rare Disease Day, a day that didn't really mean anything to me last year, well why would it?, I wasn't aware that I was suffering from a rare disease, and didn't know of anyone who did; however this year it is different.

I wasn't planning to blog about this, however I feel compelled to help raise awareness of a condition that I am suffering with. Regular readers of my blog may recall that last year I underwent an MRI scan and knee operation.

Lottie and I after my knee opertaion

The results of my MRI scan identified that I was suffering from the early onset of something called Pigmented Villonodular Synovitis or PVNS for short. My consultant and I didn't really talk in too much detail about it, as we hoped that the operation he was going to perform would alleviate the severe pain that I was experiencing.

Well fast forward a few months after the operation, the pain has spread and I have undergone numerous blood tests to rule out other things, including my calcium levels in my bone profile; my calcium levels are decreasing month after month, and my Doctor believes that the PVNS is further advanced than we initially thought.

I am very blessed to have an amazing GP, but unfortunately she had never heard of PVNS, and why would she when only 1-2 people in every million have the condition; she has promised to research and become more aware in order to help me, and faxed my consultant last Friday asking for him to see me as a matter of urgency. On Monday to my surprise I received a phone call from my consultants secretary saying he will see me next Wednesday. I cant tell you how relieved I feel to have an appointment so soon, because it has started to grind me down.

I really don't like having to take strong painkillers to get through each day, but I have to if I am to continue with normal everyday life. I have quite a high pain threshold too as I gave birth to Lottie at home with less than 5 minutes of gas and air, but this knee pain is something different. Some days I struggle to get out of bed and some nights I go to bed in so much pain that I cry; I am fortunate that Hubbie is really understanding and helps me when I am struggling.

Inside of my knee

Many people have asked me what is PVNS, well its hard to describe but here is my simple definition. PVNS is where the fluid that surrounds the joints of a limb e.g. a knee or elbow etc, is full of lumps or non cancerous tumours that grow and cause pressure and pain on the joint; sometimes the lumps can grow into the bone. Obviously there's a lot more to it than what I have briefly tried to explain, but it all goes way over my head! I really hope it has not gone into my bones, but I wont know this until I have had another MRI scan.

There are a range of different treatment options, but each come with limited success; surgery seems to be the first option and trying to remove the lumps, however it is very difficult to tell if all of the lumps have been removed, and if a tiny bit is left it will regrow. Another option could be a full knee replacement if the lumps are in the bone, but yet again it requires that all cells are removed to ensure complete success so that they don't regrow. The third option, which might be offered, is radiotherapy, this aims to shrink and kill of the tumour cells; but then the side effects of radiotherapy are not great and there is still a chance at the end that cells still might be left.

I am not sure what the treatment options I will be given and what the plan of care is going to be, but I should know a lot more on Wednesday. I am determined that even though I have a rare condition I am not going to let it get to me too much. I would also like to apologise for the amount of time I sometimes spend moaning about being in pain, but I suppose it could be far worse! 

For more details on PVNS click here.

New Shoes

A couple of weeks ago Lottie and I hit the shops like any girls do; Lottie had been given some vouchers for Christmas but we hadn't found anything in the sales that took our fancy, so we waited for the new season items to come into stock.

Lottie had some shoes a couple of months before Christmas, but I was aware that her feet were rapidly growing; armed with some vouchers that she'd been kindly given by a relative, we went into our local "well known high-street shoe shop". I have always been brand loyal to this particular shop and even when I was tiny my mum bought my shoes from there. I'm very aware how important it is for shoes to be fitted correctly at such a young age because if they are not it could lead to problems later on in life.
 

Lottie is a real girly girl at heart and loves everything pink, if I had the money I'm sure she would own a lot more shoes than what she does. As I am only able to buy a small number of pairs of shoes for the girls. it is important for a pair of shoes to be able to be worn with dresses, jeans or leggings. I have to say I was most disappointed at the options available for Lottie, all the pairs of shoes were either too grown up looking for my 19 month old daughter, or they were so bright in colour that I would have a job to make them compliment her clothes. I never had this problem with Ruby, I'd always been able to buy a really nice looking pair of practical shoes for her, but this time for Lottie I left the shop empty handed; I was not going to waste our money on a pair of shoes that I did not really like. 

A friend of mine recommended that we take a look at Livie and Lucas. The company was set up by a group of mums in 2005 and their shoes are stocked in shoe shops up and down the country. Unfortunately for us there is not a shop within easy reach, however Natalie (from Livie and Lucas) assured me that she would be very happy to talk me through fittings and everything I needed to know. I explained how worried I was about getting it wrong and she asked me to draw around Lotties feet and then use that as a template to work out the correct size she would need. With Natalie's help we worked out the best size which would also allow for some growing room too. Now the hunt began, would I like anything in stock? Of course I did, it's hard to find a pair of shoes you don't like! I eventually decided on the style Pio Pio in brown leather with a pink bird on them.

Lottie's new shoes arrived just two days after I ordered them, I was so excited to open the box and I was not disappointed, they are the most beautiful pair of soft but supportive leather shoes I have ever seen. I sent some photos to Natalie of Lottie was wearing the shoes so she could check the fit and talked me through fitting them again. I had a really positive experience and would really recommend that you check out Livie and Lucas.

I have not been asked to write this post, but I wanted to make everyone aware that there is more choice out there when it comes to children's shoes than what you think, and you can get really nice good quality shoes at a reasonable price. 

Silent Sunday!

Family Fun at the Stream

With all the recent bad weather and flooding, I have started to suffer a bit from cabin fever and so over the weekend we decided to go out for a walk down to our local stream. As a child growing up I recall having many a fun times playing in the brook that ran through my mum and step fathers fields; we used to build dams, make and sail boats, and even do some hunting for water bugs. I remember even now on one occasion finding a newt!

Ruby and Lottie have never really been out paddled in water, and I knew of just the stream to do it in. We live in a village where there is a stream that tends to overflow over the road, thus creating shallow enough water for a paddle.

As soon as Ruby saw that the water had engulfed the road she was very excited and went straight in to go for a paddle and walk through to the other side, Lottie on the other hand was more reserved, but after literally putting her in the middle of the water and giving her no option to walk through it she became more confident.

Ruby showed Lottie how to stamp her feet in puddles; Lottie loved this and everytime we tried to walk out of the water she would scream! Ruby got soaked very quickly, with her big stamps, but she was not bothered in the slightest as there was too much fun to be had.

Phil then suggested we get sticks and do some racing down the stream with them, I believe this game is more commonly known as Pooh Sticks as it is what Winnie the Pooh did a lot with his friends.

Ruby quickly looked around for a stick before placing it into the water, the flow of the water made the stick dissapear very quickly and Ruby began to cry, she was really upset that her stick had gone, she had thought she would be able to get it back. I am amazed at Ruby, she can be such a sensitive little miss at times.

After we had all got considerably wet from Ruby and Lotties splashing, we headed home to the warm to dry off and enjoy a lovely cup of tea. We had a really lovely time and both Phil and I commented that it felt like we had had a proper family day and what was equally as brilliant was that it did not cost us anything!

It's Half Term!

Well its the start of half term here in Leicestershire, and its no great surprise that its raining! I shouldn't moan though when I think about all the people who have been so badly affected by the floods, my thoughts and prayers are very much with them.

I have been looking forward to half term for a couple of weeks as I get to have Ruby all to myself and don't have the chore of the school run. I was certain that Ruby was looking forward to a break from school as she has been getting increasingly tired; this has led to a few tears and melt down moments. She started school back in September but doesn't turn five until the very end of July so she is one the youngest in her year; I think it shows with how tired she has become, combined with the fact that she is always so busy and on the go all of the time.

This Morning we woke up at our usual time of 7am and had a little lay in, before sitting down to a family breakfast before getting dressed. Ruby burst into tears when I said she didn't need to put her school uniform on as there was no school today; so here was me thinking that she would enjoy some time away from school... well it appears I was wrong! Ruby loves school and if it was her choice then she would be happy to go every day!

Ruby's school had set homework for this week and anyone who is familiar with my blog will be aware of how much I love homework, not! If you haven't read my thoughts on homework then you can find the post here. My thoughts still have not changed, a school day is long enough let alone having extra work to do; but I do support Ruby in doing her homework. Ruby and I decided that in order for us to do whatever we wanted, when we wanted to do it this holiday, we would get the homework out of the way.

Education City

Ruby had been set about twelve different activities to do on the computer, via a website called Education City, she completed these within an hour or so before we had a cup of warm juice and she read two books to me. We still have a sound and word book to complete, but I am pleased that we have got the majority out of the way at an early stage in half term week.

So this brings me to the rest of the week, what are we going to do? Lottie is feeling a bit under the weather so I don't want to plan too much, only for our plans to be cancelled, and also the weather makes it a bit more tricky to enjoy some good outdoor fun.

An afternoon of lego

Ruby and I chatted over lunch about what we would like to do, and have come up with a list of a few things we will do. Our list includes baking cakes or cookies, a teddy and toy picnic, an activity in the tuff tray, painting and craft and then trying to find a bit of nice dry weather to go to a park. I would love to know what you have planned for half term, maybe we could share some ideas?

Silent Sunday!

Review: Blossom Magazine

We were recently asked by Blossom magazine if we would be interested in reviewing the latest edition of their magazine, and let you all know about an exciting competition that they have launched. Ruby is a typical four year old who, when we go shopping, always asks for a magazine; so when we got given the opportunity to review Blossom, I knew she would love it. Ruby always loves all things girly and pink, which is great as Blossom is just that.

Blossom is published by Immediate Media who produce a range of BBC titles for both adults and children; it features many of Ruby's favourite TV shows and characters. The magazine is aimed at girls aged between 4 and 7. Each magazine is full of stories and covers many areas from ballet and bug hunting, to even learning some French! Each issue comes with a gift and the February issue contains a lovely fairy painting set. The magazine is priced at £3.25 which I feel is good value as the content and gifts are of high quality. I would have liked to see more content induced though as it is only a monthly publication.

 

The publishers are launching an exciting story writing competition in conjunction with World Book Day. Readers are asked to complete a story with their own words and ideas, and the winning entry will have it published, as well as receiving hard copies to hand out to friends and family; they are also hoping to arrange a story-telling visit to the winner's school by a popular children’s author. Ruby has said that she would like to write a story of her own to enter into the competition.

Ruby was so excited when I showed her the magazine; she sat down and read it cover to cover. She was captivated by all of the stories, games and puzzles, it was definitely a hit with Ruby. She has also made me promise that we will sit down this weekend and paint her model fairy!
 

Overall we are very impressed with the magazine, and I will definitely consider buying it for Ruby in future. 


Ruby + Lottie Rating 8 / 10


Disclaimer: Whilst we were sent this magazine to review for free, all thoughts and opinions are our own.

Silent Sunday!

Tom Ted's Adventures!

Yesterday Ruby came home from school and couldn't wait to tell me that her teacher had given her the class teddy bear, Tom Ted, to look after for the evening. Tom Ted came with a blanket, torch, camera and diary. Ruby could not have been more excited.

 

Tom will be making his way around all of the children's homes over the next few weeks. Each child, with the help of their parents, are asked to create a diary entry for Tom, complete with pictures so that by the end of term the diary will be full of stories from all of the children. Ruby wanted to write about, and include photos of everything she got up to with Tom Ted; we ended up taking up three pages of the diary! I hope we left enough room for everyone else!

 

Ruby was sad to take Tom Ted back to school this morning, but was excited that she would have the opportunity to stand up in front of her class and talk about all of the fun things they got up to together.

The aim of this exercise is to give the children the chance to care for something precious, take part in a whole class event and communicate about their experiences. I really hope we get a chance to look at the completed diary at the end of the exercise and see what all of Ruby's friends got up to.

Ruby and I had a really fun time working on this together; this is what we wrote:

---

At Ruby's House - 6th February 2014

After school I took Tom Ted to my Nana's house. We had to go outside to do some jobs, so we put our coat and wellies on.

We collected wood and fed the chickens some corn. Can you see Betty?

Tom Ted collected the eggs.

We played in the outdoor play house.

We Pumped the water.

We played in the garden with the wooden man.

We looked and smelt the beautiful flowers.

Our next job was to feed the horses, Tom Ted liked to stroke "Lady".

Tom Ted was very tired after he had done all of the jobs. He had a little nap in a dog bed!

He then woke up and played some games with and Uncle Harry and me. I made a rocket for Tom to go to space.

Tom Ted enjoyed stroking Chesney the cat.

We then had dinner. Tom Ted was feeling tired so headed upstairs to bed.

I read Tom a bedtime story with the help of my frog and my pet fox.

Sweet dreams Tom Ted! Night night.

Why did the chicken cross the road?

So where do I start... with a joke of course.

Why did the chicken cross the road? Well the answer is easy, because he wanted to get to school! 

OK, it's not funny is it? Well today has been a really random and slightly mad day. It all started a couple of weeks ago when Ruby was set some homework to bring in an object that started with the letters 'ch'. We spent some considerable time thinking what we could take into school for her to show and tell to her class. Normal things to take in would have been a toy chimpanzee, chocolate, cheese, but no Ruby enthusiastically replied "I know... I can take Betty the chicken"!

We are very blessed that my mum has a small holding, you may have seen some of the outdoor fun we've had whilst we've been at her house. Betty the chicken lives with a group of about 8 other chickens at nanas house, Betty is by far the smallest of the lot and is very gentle and loving. 

 

I was a bit nervous about taking a real life chicken into school, I wasn't even sure if the teachers would say yes, but they agreed that it would be such a different learning experience to see a real life chicken. Now the practicalities, how do I get a chicken to school, how do I catch her? Yesterday I was really doubting if this was doable, thankfully Grandad was on hand and decided the best way to transport Betty to school was in a plastic box with wire over the top so the children could see her but she would also be contained and not able to escape. 

As I arrived into the classroom all the children were sat on the floor with Ruby standing next to her teacher, I could hear all the children getting excited and some didn't believe there was a real chicken in the box. Ruby talked about Betty and explained that she liked to eat corn and she lived with some other chickens at her nanas house, it was a very proud moment for me and I can already see teacher like qualities beginning to show in her, I wonder if she will be a teacher when she grows up, she's already told me she'd like to be.

After Ruby's talk, her class took it in turns to stroke Betty and look at the eggs we had collected the night before. Betty behaved fantastically and I'm pleased to say all the children had a lovely time.

Next weeks sound is 'ai' so shall we take in a snail! I'm sure that would be easier than this weeks!

Silent Sunday!