Monday 30 September 2013

Pintrest ~ my scrapbook

I’ve started looking into Pintrest and it seems like it could be really useful for pulling together all the fantastic mummy and epilepsy things I stumble upon and want to share on this blog but just don’t have the space or it just doesn’t look quite right.  So I’m going to put a link to it on here and you can all see what you think and hopefully it’ll give some ideas for things to do and information and support about general pregnancy and epilepsy in a fun and easy to look at way.  Click below and enjoy!

Friday 27 September 2013

2 years seizure free :) but what does that mean to me?

Please don't get me wrong with this post... I feel really lucky to have gone 2 years without a major seizure, my epilepsy is pretty well controlled and I feel blessed for that.  Most of the time I'm really positive about it all.  But sometimes like I am sure everyone does I get that fear, this is just me writing that down.  So hope you don't mind...

It’s been 2 years now since my last major seizure, in fact over 2 years, the day came and went without me even noticing… it got me thinking what does that mean, the fact I no longer keep track of my seizure free time?

Is it because I haven’t been completely seizure free? I am still having the occasional partial seizure but I can live with them… it’s just when I have one it sort of scares me into thinking I might have a major seizure.  In a way at the moment I don’t feel confident enough in my seizure control to drive even if I did go a year with nothing, so on the bright side at least I still keep my disabled bus and rail card otherwise travel would cost an arm and a leg.  Yesterday I was on the bus and found out a return to Redhill about 30minutes away had gone up from £4.60 to over £6!

I read a blog the other day by a girl who had been in her car when she had her first seizure and by some miracle didn’t hurt anyone.  Her blog was really moving, it voiced what I always felt, that I could never trust myself enough to drive.  I thought it was just me being a bit pathetic feeling like I shouldn’t ever drive again but it turns out I am not alone.  Here’s a link to it:

Or maybe it’s because I have gone 2 and a half years before without having a seizure and then had one for no good reason… maybe it just doesn’t mean much, maybe 3 years will be a big day… or maybe I just can’t trust my brain 100%, maybe there will always be a part of me that worries I could have one any moment and with no warning. 

I think for me the fear fades and my confidence grows as time goes on, the anniversaries don’t mean so much.

Wednesday 25 September 2013

Pregnancy Diaries won Highly Commended at BMA awards!!!

So the pregnancy awards won a Highly Commended at the British Medical Associations Patient Information Awards.  The final verdict was...

"I'm positive this resource is like a breath of fresh air for women with epilepsy (planning to have a baby or pregnant). The images give the feeling that one should treat pregnancy as normal and healthy (despite the necessary extra health worries/checks). Reading this - I get the feeling there's light at the end of the tunnel. This book is very much about maintaining a good quality of life and enjoying pregnancy despite living with epilepsy."
And here are a few facts I was given which show how successful the campaign has been

  • Over 3,000 copies of Pregnancy Diaries sent to women with epilepsy.
  • 3,784 individual people have viewed the Pregnancy Diaries online.
  • 1,377 HealthE mum-to-be resource packs requested and distributed to medical professionals. [These packs included at least 5 copies of the Pregnancy Diaries].
  • Poster presentation on Epilepsy Action’s research regarding pregnancy and parenting and the Pregnancy Diaries at the International Epilepsy Congress in Montreal.
  • So far 9 mums have become part of the Pregnancy Diaries online, and another two are currently writing their diaries and getting ready to join up.
I also got a lovely e-mail from Nicole at Epilepsy Action giving some really lovely feedback from Mums.  It makes it all seem worth while and I am so glad I have been able to help at least a few other women.

It has been amazing contacting women from all over the world on Twitter.  So what are my plans now?

Well I have a few ideas... I am getting involved in a pregnancy and parenting with epilepsy workshop at Epilepsy Action's weekend for all on the 1-3 November 2013 in London.  Here's a link to get more info about the day itself and I will post more when I know more about what's happening.  At the moment it would seem that it will probably be on the Saturday but I will be around both days :)

I was also thinking of having a page on this blog for other women to tell their stories and add their contact details if they want.  If you are interested in adding something to the page then please e-mail me, is great to hear from other women.  My e-mail is:

Baby Carriers ~ Pros and Cons

Baby carriers has always been a little bit of an issue with me... before I had Riley I sort of thought that carrying her in a carrier was too much of a risk.  Then I spoke about it quite soon after having Riley when I started using one because she would scream so much when I tried to do housework so having her in a carrier was far less stress for me.

I loved having her in a carrier and if I didn't have epilepsy I think I would have used one a lot more.  I had a moby wrap which I was kindly given for £5 and Riley loved it :)

While in Devon we realised that we couldn't get very far with Riley in her buggy and we like to explore the outdoors.  So we decided to buy a proper backpack baby carrier and it is fantastic and Riley seems pretty happy in it.

Would definately recommend a carrier if you don't have epilepsy, if you do it's just a matter of weighing up the risks with the benefits and for me Riley's love of the outdoors means I'm willing to go with the backpack and Rich wears it quite a lot of the time anyway.

Our Holiday to Devon

Well we had a great time in Devon.  Although the weather wasn't fantastic we still got out and about, as Billy Connolly said "There's no such thing as bad weather, just the wrong clothing".  Riley wore her little puddle suit and wellies and was quite happy to paddle in rock pools and explore the countryside of Devon.  We did lots of lovely things, went on a steam train, swimming (in a pool not the sea, too cold!), explored a model village and saw some otters and butterflies.

And Riley started walking!!!  She's not walking far on her own, she can manage about 15steps so she's doing fantastic :) she'll be off in no time and I won't be able to keep up, then she'll be trouble!

The only problem with going on holiday is we always seem to get ill, this time we all came home with a cold!  And due to that and the change in routine Riley's sleeping went out the window so have to admit I don't think we came back refreshed!  But all seems back to normal now, a couple of hard nights of controlled crying and we all seem to be getting a good nights sleep.  So all in all we had a wonderful time.

I'll post some pictures in the coming weeks when we manage to get them all together (there are bits and pieces on all of our phones and cameras!  But for now I'll leave you with this beautiful picture of Rich and Riley.

Thursday 12 September 2013

We're off to Devon :)

About this time 2 years ago we were off on a family holiday.  Things were very different then, I can't believe how much can change in 2 years.

I had just had a big tonic clonic seizure while at work and was feeling a bit down and our break away was just what I needed.  I was also pregnant although I didn't know it at that point, I was only a few weeks gone.  It means that this holiday represents almost 2 years free from major seizures (touch wood)... 6 months more and it'll be the longest time since I was diagnosed over 8 years ago now.

My Grandad was also with us on that holiday.  I have spoken about him a lot in this blog, he was such an important part of my life and our break away in Wales with him was one of the best weeks of my life.  I still miss him, I think about him every day, but as time goes on I can focus more on all the amazing memories I have and I cry less for the huge gap he left in our lives.  So this holiday is bitter sweet, it will be such a wonderful chance for us to be together as a family but at the same time Grandad was meant to be there too.  But he would not want us to be moping around so we'll be remembering all the good times :)

So I am very excited about this holiday, it'll be Rich, Riley and me with my Mum and Dad, Dan and Nikki and Lily dog.  A whole week together as a family exploring Devon :) will post some pics when we get back.

Friday 6 September 2013

15 Months ~ where are we at?

Just a quick note to say...  she's completely weaned!  Last weekend I stopped giving her a bedtime feed and instead she had a cup of cow's milk.  And we haven't really had any tears, I think it helped that our bedtime routine was always: breastfeed, bath/wash, story, sleep so we just took out the breastfeed and added a cup of milk to her story time.

On Saturday she had a tummy bug, (which I then got on Tuesday!) I almost gave her a feed again as I was worried she'd get dehydrated, but we stood our ground, it had to happen sometime and we'd already done Friday night.  So that's it, no more Mummy milk.  I feel a bit sad about it, she doesn't need me anymore!  But at the same time it's quite nice knowing I don't necessarily have to be there every bedtime, I can go out earlier :)

Also in the development news... Riley's walking round the furniture now pretty quickly and walking holding onto one of our hands!  I'm not too fussed about the walking, I can keep up with her while she's crawling when she's walking it'll be a bit more difficult!  I just want her to be able to go where she wants which is why I was so desperate for her to crawl, I know she'll walk in her own time.

As for communication, I think in the last 2 weeks she has really moved forward, although she doesn't say many clear words, her understanding has really improved, she follows a lot more instructions.  She's also started using sounds consistantly.  Like she say "di di" and waves when people go.  I really feel like she can communicate more with us and that is a huge step in my books :)

Running and Travel Insurance

My marathon idea may have to go on hold for a while.  It suddenly dawned on me that if I did have a seizure it could still ruin things...

I've mentioned it before but we are going to America next March, which is going to be amazing.  But I have recently started thinking about the practical side of it.  One of the things I need to consider is travel insurance.  It's going to be more expensive than everyone elses anyway, that's just the way it is... but when I was first diagnosed we had to cancel our family holiday to America because the insurance company refused to cover me at all.

If I have a seizure it could really effect things, I may not be able to ski as they may not allow me to have winter sports cover or even worse they may not insure me at all.  So I think just to be safe I will wait til we get home.  I truely do want to run the Marathon, it's been one of my major goals in life, I don't want epilepsy to stop me from reaching my goals.  But hopefully I'll be around quite a few more years so I have time!

Just thought I'd leave you with a photo of where we are going on holiday.  It's a photo of when I went there as a child.  It's why I find California so amazing and why I can't wait to show Riley real snow!

Back to School and Busy Buses

I think I have been lulled into a false sense of security over the last few weeks.  Glorious sunshine and lots of picnics and no school kids flocking to the buses.  We can't say we haven't had a summer, it has been wonderful. It makes not driving not so much of a problem.

Today was a bit of a culture shock.  It was wet (although not that wet so was more like a little practice run for winter) but we can overcome that, waterproofs and walking boots are now out of the cupboard again!

But the biggest problem was the school kids, I had forgotton just how many there are squashing onto the buses on a wet day.  Today it was impossible to get onto the bus home so I walked the 30minutes into town by which time the buses were quiet in that lull between school time and communtor time!  But it keeps me fit and wasn't in any rush today.

I just need to plan my time better again, it's one of the major problems with not driving.

Thursday 5 September 2013

Save the Local Bookshop

As many of you know, I am passionate about books!  I may struggle to read many books myself (I'm dyslexic and find taking in what I am reading quite hard so find it hard to get into a book)  but I think all children should be brought up surrounded by books.  It's something parents can share with their children and I just love reading stories with Riley.

That is why I am passionate about librarys and bookshops.  I love going to the library with Riley and picking out books together.  I also always try to buy books from our local bookshop rather than Amazon.  That's why I was so sad when I heard on the news our local bookshop was closing down.

The lady that runs the shop is so lovely and they are always so friendly when you go in there.  They'll have a chat with anyone and Riley always seems happy when we go pop in.

We went in there today, I wanted to get a book and indeed they did have it.  But they were also looking for people to buy a share in the shop to make it a community book shop and we wanted to buy Riley a share.  It turns out that they have had someone offer to buy the shop to make it into a cafe and the bookshop will be at the back.  It'll make it even better, you can pop in for coffee and a good chat and then grab a book :)

I am so pleased, there is something special about going into a bookshop, you can browse, read a snippet and just get an idea of a book before you buy it, you might even stumble upon a great book you never even knew existed.  You just don't get that on Amazon.

So have a look on the website and if you're around the area it's well worth popping in :)

Nana Dog ~ Riley's a Fan

Nana Dog...

As I am sure everyone knows, Riley loves dogs... Dog was her first world and is still the word that she can say most clearly.

When she sees the ipad she points and say 'dog' and this is the main reason why... (it's amazing!)

You can find out more about Nana here: