Friday 26 July 2013

Other People's Children ~ something I hadn't considered

Someone said something to me the other day, it got me thinking... when Riley's bigger and invites friends round, do I tell the parents about my epilepsy... I mean it seems only fair I do but then I'm not sure how they will react... I suppose it's a bridge to cross in the future. One important thing which I think is good to consider is teaching your child as early as possible how to get help if anything happens to you. Epilepsy Action has some useful information about looking after a toddler aged baby here:

2nd Children! Not yet I don't think...

It's getting to the point now where some of my friends with babies Riley's age are starting to think about 2nd children... I can't even begin to think about that now, for a huge range of reasons!

Firstly I am starting to quite enjoy getting 7hours of straight sleep at night, I feel some what human again! Secondly we're going to America in March, don't want to be ruining that.

Thirdly there is all the issues around medication... do I stay on a high dose of Lamotrigine, or do I reduce it and risk a seizure, I might have a seizure anyway like I did last time I was pregnant anyway, or do we try something else like Keppra and hope a lower dose controls things. I know this is something I need to think about soon, especially as it could take years to get things right, but not just yet. Touch wood I haven't had a major seizure on this dose and I am only getting partial ones about once every 3 months which is nothing really.

Finally, this is an issue I discussed with another friend who doesn't have epilepsy but can't drive. Can you imagine standing at a bus stop with a 2 year old who is walking but doesn't quite understand fully the risk if traffic, with a tiny baby screaming... I don't think I could cope, so I think a slightly bigger gap will make things easier and safer.

So they you have it, in short the times not quite right just yet.

Sunday 21 July 2013

Breastfeeding ~ time to stop

Well the time is coming to stop breastfeeding completely... I am currently only giving her a feed before she goes to bed and then I give her one when we go to bed... (mainly because she was such a bad sleeper and it means we get 7 hours sleep, but really she probably doesn't need it!)

The plan will be just to give her a cup of warm milk before bed and then hopefully she will sleep all the way through to morning.  It will be very strange not breastfeeding anymore, on the one hand it will be nice to be able to just go out for the evening without worrying.  But on the other hand I feel a bit sad, feeding is always quite a special time, we won't have that anymore.

But thinking about stoppping breastfeeding has got me thinking about breastfeeding generally.  I have to say I feel quite proud that I am still breastfeeding, it hasn't been all easy but on the whole I think I have been quite lucky with it.  I would say the first 3 months are the biggest challenge, they were hard, it felt like I was constantly feeding her, mastitis, feeling I wasn't giving her enough milk or producing too much... but I continued through it and after 3 months it became so easy, no sterlilising, supply and demand kicked in and I have loved it.

I know that many women with epilepsy are told they can't breastfeed as on most medication so make sure it is something you discuss well before the birth so you feel confident to advocate it after labour.  Here's some information from Epilepsy Action:

Here are a couple of websites I found helpful when it came to breastfeeding generally (click on icons): 

Go to the NHS Choices homepage

Development ~ worrying needlessly!

Sometimes I overthink how Riley is developing compared to her friends.  I think because I am always worrying about what my medication might have done to her, I compare her too much to other babies.

I worry a bit because she's not walking, but then she is crawling fast and she walks around the furniture and is getting there bit by bit.

Then I worry that all she seems to be able to say is 'dog' and all she can point to is her head... but then she babbles away really expressively and learns things all the time, today she started moving her hand in front of her mouth while making a noise...

I think I just need to calm down and not worry, because she is a wonderful little girl, my little girl and I love her so much :)

Monday 15 July 2013

My new job ~ really positive start

I am really enjoying my new job.  The fact that I can still get out and about and talk to staff and parents about what I am doing to get there ideas is fantastic, I couldn't imagine doing an office job sitting at my desk all day, I just can't keep still that long!  But on top of that I feel like I am helping parents, or at least have the potential to help parents if I do a good job :)

And one of the best bits is I'm not thinking about my Epilepsy the whole time while I am at work as it makes no difference to my job, even if I was having regular big seizures I could still do my job, that is a good feeling, it means I no longer worry so much about having a seizure in relation to my job, and now Riley is getting bigger, if I do have a seizure with her the impact would be far less for her.  Don't get me wrong, I still think sometimes if I have a seizure now Riley could get hurt (especially now I'm carrying her up and down stairs as she's too big for her car seat) but the fact is I think about it less at work, which can only be a good thing :)

Fun in the Sun ~ the sandpit sarga ends!

Well the hot weather continues and we are definately making the most of it spending almost the whole time outside.  This weekend we had a BBQ and the sandpit saga finally ended!!!

Basically Mum and Dad bought Riley a sandpit for her birthday, when we put it together it was so easy to pull apart a child could get their fingers stuck in it... so we took it to pieces and eventually managed to send it back.  But we started looking at more wooden saindpits and they all seemed as bad as that one with aweful reveiws.  Then we found this one on the John Lewis website, it is fab (took a while to put together as we didn't have an electric screw driver but Riley loves it :) she just loves sand!

So if you ever want a wooden sand pit I would recommend the following! (and it takes 5 20kg bags of sand to fill!)

Our new addition to the family!

Our new horse... we are very very lucky to have been given a wonderful horse by a friend.  After losing Mac who we loved so much and who we had for 14 years we never thought we'd find something that would look after us half as well.  Riding has been a huge part of my life since I can remember, my family have always run a livery yard so I have just grown up around horses.  My epilepsy could have stopped me from that, but I never wanted to let it stop me doing things, so safety stirrups on (and a body protector to begin with ~ but after a while it became way too hot in the summer...) I continued :) I always felt Mac looked out for me and I just felt safe on him, in a way he was my best friend.  When we lost him so suddenly I was heart broken.

While Mojo (or Bear, we haven't quite set on a name, he was Mowgli but we already have a Mowgli in the yard...) will never be Mac, he is lovely and settling in to be part of the family.  Let's hope it continues.

Thursday 11 July 2013

We're going to the Open East Festival ~ Very Exciting

Very excited... we are going to the Open East Festival on 28th July :) it's the opening of the olympic park and marks a year from the opening of the Olympic games.  Very exciting and we got given the tickets through Epilepsy Action as a thank you for the volunteering which is lovely.

"The weekend-long celebration will include live international music, the Real Food Festival, and The House of Fairy Tales which will present a Mini-Travelling Art Circus featuring theatre, magic, music and games. East London artists will be signing their work at the Art Car Boot Fair. Caught By The River share their passion for literature, angling, music and beer with the Park as they host celebrated authors and musicians performing for audiences, whilst Eco Design Fair will curate an arts & fashion market showcasing the best up-cycled, vintage & contemporary design London has to offer. There will also be interactive family storytelling and hands-on arts & crafts workshops with the Discover Children’s Story Centre, plus performances and workshops from Theatre Royal Stratford East, Boy Blue Entertainment and Ida Barr, promenade musical performances, pop up theatre, family trails, picnics along the riverbanks and more."

Out and About ~ Your rights to discounted Travel

Standing at bus stops in the rain can be pretty depressing but in this glorious sunshine it's great to get out and about :) I just wanted to post about the rights to transport that people with Epilepsy have as the bus costs an arm and a leg and I couldn't imagine sitting at home all day, I have to be out and about.

Firstly you are entitled to a disabled rail card, it costs £20 and you get 1/3 off rail travel for you and one other person (you can also add it directly onto an Oyster card):

Disabled Persons Railcard - Home
(Click image for link)

If you live in a London Borough you are entitled to a freedom pass which will give you free transport on almost all of London's transport:

We live a couple of miles outside Sutton so are not eligable for a freedom card, which is very annoying!  But you are entitled to free bus travel at all times, you need to contact your local council to find out how to do this as each is different, but this is what they look like:

To find your local council go to:

I know that when you have a young baby you just want to get out and about and most people have a car to do that.  Getting public transport just takes a bit more planning, but it is possible so get out there and have fun in the sun :)

I'm on Twitter!

With this new job I've learnt a lot about Twitter and have become a convert! Before I started learning about Twitter this week I didn't really get it. But now I can see that it could help to reach more women which is the whole aim of my blog...

So follow me on Twitter :)

Tuesday 9 July 2013

Enjoy the Sunshine ~ get some vitamin D

Something a lot of people aren't aware of is that anti epileptic medications can reduce your vitamin D levels. Most people in the UK have low vitamin D levels purely due to the weather, but often people taking AEDs can have even lower levels.

Vitamin D is important to build strong bones, it helps lay down calcium on your bones. Low levels can increase the chance of osteoporosis in later life so worth considering taking a vitamin supplement... have a chat with your GP or specialist if you are concerned at all.

My vitamin D levels were checked when I first was referred to London to see a specialist and were found to be almost in the seriously low category. I started a calcium and vitamin D supplement but after a year it didn't make any difference and even at the end of the summer my levels were very low.

I have been to the GP a few times about it, but they never take me seriously, telling me I need to go out in the sun more, when I tell them I do, they just don't believe me. I make a real conscious effort to make sure I spend about 30minutes in the sun before putting sun cream on. Because I can't drive I'm outside a lot.

But I am now taking a vitamin D supplement on it's own without the calcium and I make rue I'm out in the sun as much as I can be. Last time my levels we checked they were low but not seriously low, I think that's the best I'll get for now.

Anyway, enjoy the sunshine, it lifts the mood and it's good for your bones :)

Here's a link to the epilepsy action page on bone health:

Friday 5 July 2013

Riley's Development ~ 13 months


I haven't really spoken about how Riley's developing for a while.  Well, she seems to be pretty much average, she's reaching all her developmental milestones (as they like to put it) around about the times she should do.

She's now walking with her push along walker and today she took some steps holding on to my hand with just one hand.  She crawls very fast and pulls herself up on furniture and cruises round on it.

She's eating really well, I'm only giving her a breastfeed at bedtime and at 11pm when we go to bed, next step is to cut both and just give her a bottle of warm milk at bedtime.  Not sure when that next step will be... it's quite hard finally stopping breastfeeding after over a year.  But it will be nice to be able to go out some nights without having to worry about being there to feed her.  It will happen soon.

She points at things now and she is vocalising with lots of different noises.  Her main word still seems to be "Dog" but we're sort of hearing more words in her babble and she seems to understand a lot more everyday.

She is becoming quite clingy to Rich, my mum and me... and at nursery she's got attached to her keyworker!  I am sure that she will become more independent but at the moment that's probably the hardest thing.  She just shys away from people who she knows but doesn't know well, like she thinks we'll leave her with them.  She's fine with strangers...  but I know it will pass, it's just a phase.

So there it is, Riley's development in a nut shell :)  basically she's a very healthy happy baby ~ proof epilepsy shouldn't stop you becoming a mum

Chicken Stock...

Ok, from a big life change to chicken stock... oh how I live life to the full!

But seriously, stock is one of the things which I have found a nightmare.  Everything we make pretty much uses stock as part of it and all the books (and healthvistors etc) tell you not to use normal stock, understandably as it is full of salt.

I don't know if you've ever bought baby stock, but it is pretty much made of nothing, it just makes the water cloudy.  Then there's the stock you can buy in bags in the supermarket already made up.  It's fine but it costs loads (although you can freeze it in icecube trays so it does go a fair way.

Anyway I have now started to make my own stock, we have roast chicken pretty much every other weekend, so I just boil the chicken carcus, add some vegetables (carrots, parsnips and leeks) then boil for 4-5hours, drain off the stock and freeze in ice cube trays.

Everyone's probably already thought of doing it, but I've just been emptying the trays so thought I'd share it.

New Job ~ First Week

I haven't written anything for a while.  The main reason is I started my new job this week and it has taken up most of my brain power!  My first week seems to have gone well, everyone in the team seems lovely and I think most of what I have been taught this week has sunk in.

I've basically started in the role of online community co-ordinator for the information section on the website of The Children's Trust where I have worked as a rehab care assistant for the last 4 years.

It's a big change, first off because it's non clinical, I've never done an office job before so it's a bit strange sitting at a desk, hope I don't get fat!  But the biggest change is it's something that before I did this blog I knew nothing about, and this blog only scratches the surface.

But it is very exciting, the brain injury hub is great and I think what it provides is a great service to parents and families of young people with epilepsy.  They need the support of each other as they travel on their journeys full of highs and lows.  I am really looking forward to getting stuck into it, so watch this space.

(Also it has prompted me to link this to my twitter, now I know a bit more about twitter)