Adapting to life with two children!

I can't believe I haven't posted since January, that's how quickly life with two children is flying by.  So I feel I need to give a bit of an update on what has been going on over the next few months, so here goes.

Life with two children

So it's taken some getting used to but I think we are now in a fairly good routine, Riley is at pre-school two mornings and one full day a week which means I get some time with Benji to really concentrate on him.  It's still quite a challenge thinking about when Benji needs his feeds and nappy changes alongside when Riley needs to go to the toilet and pick ups from pre-school on the bus!

Benji's development

So Benji is 5 months old now and doing really well.  He's growing really fast and weighs 16lbs 8oz now.  He's very different from Riley in his personality, he seems to do a lot more thinking but is such a smiley chilled out baby.  I just love seeing his smile when he wakes up in the morning. 

In the last week he has found his feet and is sitting independently for a few minutes at a time.  He can also stand up holding onto things and loves to look out the window like Riley used to.  He is also becoming much more co-ordinated with his hands and is able to grab toys and really investigate them.

He also loves songs and actions, he's just really interested in the world and is becoming a proper little person.  Can't imagine life without him around now.


Breastfeeding and weaning

So I am still exclusively breastfeeding Benji and I have to say it's not been easy but I am glad I have persisted.  I was quite ill for almost 3 weeks, I think I had the flu which then turned into a chest infection and I was really struggling to get enough fluids in me to keep my milk quality up so I just ended up dehydrated.  I am also struggling to get enough calories to maintain my weight, the same thing happened with Riley.  At the moment that's not a problem as it just means that I have lost all my baby weight and a bit extra which isn't a bad thing but I don't want to keep losing weight at this rate so I will be glad when Benji starts eating a bit. 

Which brings me onto weaning, we gave him a little bit of carrot today which he seemed quite interested in and he took a few sips of water from a sippy cup. We're going to take things nice and slowly as he's only 5 months so still early days but he is showing all the right signs, putting everything in his mouth, started sitting up and really interested in what we are eating.

Sleep and mood

So Benji has started waking a bit more in the night, not to the same extent as Riley used to but he is usually up 2-3 times for feeds and sometimes is awake for an hour or 2 in the night.  He does however settle himself and sleeps in his cot for naps in the day which to me is a miracle compared to the problems we had with Riley.  I do struggle when I don't get more than 3 hours sleep in a row and it does effect my mood, partly I think because I just need quite a lot of sleep and partly because I then worry I might have a seizure and having been seizure free for 16 months I don't want to ruin that.  I have also had to cut back on the running firstly because I wasn't well and then because I don't feel I'm getting enough sleep so it's a bit of a catch 22 because running helps my mood but if I haven't had enough sleep I don't want to risk having a seizure by running.  I'm hoping to get back to it as soon as possible as still planning to run the 2017 London Marathon.

As far as mood is concerned I feel really let down by my health visitors, I told both my GP and health visitor I was feeling low at my 6 week check.  It took them 2 weeks to even call me to follow it up and then they just left a message which I lost and so I never called them back and yet no one ever followed it up.  I was pretty high risk having struggled following my first pregnancy and also being on a medication which is linked to problems with mood.  It just makes me upset that I asked for help and they only made one attempt to see if I was ok.

Potty training

Potty training is still on going with Riley.  It's hit and miss, and always seems to be more of a hit when there is something in it for her, so at the moment she gets points for each wee and poo she does and then she buys lego from the 'Daddy shop' each evening and the number of accidents has definitely reduced!  She's still not great at telling us when she needs it but at least we are getting by, I just worry about what will happen when she starts school.  Sometimes I get frustrated but I need to remember there is always the possibility there is something physically wrong because of my meds but that can't be investigated until she is older.  So for now we just have to find a way to get by which I think we are doing.

Driving

Well I am currently applying for my licence, I haven't done a great job of filling in the form and it's been sent back twice but hoping third time lucky.  Part of me is excited to get some independence back and part of me is terrified of actually driving again after so long and also the thought that I could lose it again if I have another seizure... so not quite sure how I am feeling about it all at the moment.

Epilepsy Blog Relay!

So I am taking part in this months Epilepsy Blog Relay, but what does that mean?  Well here's a bit of information about it and how you can get involved.

Living Well With Epilepsy’s Epilepsy Blog Relay is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma.

The concept is simple. 30 bloggers post on their own site, each taking one day of the month. In their post, participating bloggers are asked to acknowledge the blog relay with a link back to Living Well With Epilepsy and to promote the next day’s post.

This month the epilepsy blog relay is running to support Purple day which is on 26th March and the blog relay is going to cover the following topics week by week.

Week 1: Epilepsy in Everyday Life (Mar 1-7)
Week 2: Tech and Innovation in Epilepsy (Mar 8-14)
Week 3: Epilepsy and Families: Awareness Matters (Mar 15-21)
Week 4: Creativity and Epilepsy (Mar 22-28)

I'll be writing for it on 19th March, I'm still working on what I am going to write about so watch this space.

You can get involved on social media and spread the word using #epilepsyblogrelay

You can see all the participants and read their brilliant blog as they write them here.

 

Hello 2016 and the running shoes are back on!

Tomorrow Benji will be three months old, he's sleeping pretty well (giving me a good 4 hour stretch most nights followed by 3 hours) so what better time to start running again than New Years day!

Although saying that I don't want it to seem like this is a New Years resolution that will fall by the way side in a few days or weeks.  Far from it, running is something which has always been important to me, at school it was my way of coping with the stress of life at that time. I always wanted to run the London Marathon and was working towards that goal when I was diagnosed with epilepsy.

In fact it was while running that I had my first few seizures which really knocked my confidence at the time, made me fear running, but now while it makes getting back to running a little daunting it's also a big challenge which would prove my epilepsy was controlled once and for all.

Before getting pregnant with Benji I had started running again and it was going really well.  An added benefit of running was that it seemed to counteract the negative effects that Keppra was having on my mood, another reason I am so keen to get back to running again.

So all in all the idea of getting my running shoes back on today was a really positive step and it felt really good to be out running again, I feel my mood lifted already after just one run.  I'm not going to lie, it was tough and I know I have lost a lot of fitness but hopefully in 14 weeks I'll have built up to running 10k, that's where I was at when I was diagnosed with epilepsy 10 years ago.

After that I plan to start doing some park runs, working up to running the London parks half marathon next October and then the 2017 London Marathon - achieving an ambition I had long before being diagnosed with epilepsy but which has become all the more important as the years have passed.

And I'll be running the London Marathon to raise money for Epilepsy Action.  I don't even have to think about it, they have given me so much support over the last 10 years, without them I wouldn't be in the position I am now.  When I was first diagnosed it was at an Epilepsy Action event where an accredited volunteer (you know who you are) stood up and told his story, suddenly I saw a way in which I could turn this awful situation into something positive, into a way to help others.  Becoming an accredited volunteer turned my life around at the time, it gave me a purpose.

Epilepsy Action has helped empower me to become more knowledgeable about my condition than most of the health professionals I come into contact with.  They gave me the confidence to push for better care and the wonderful team I now have in London.  Probable most importantly they introduced me to Kim, the epilepsy midwife who helped give us the confidence to try for a second child after such a traumatic first birth, who empowered us to take control of my second pregnancy and made it such a positive experience.

I want to do something to make sure that others like me get similar support and facing the huge challenge of running the London Marathon just makes perfect sense.  Writing this post sets it in stone and hopefully if all goes well in just over a years time I'll be achieving a huge life goal while also raising money to help others with epilepsy gain the support they deserve.

So here's the reason I am running - for the two beautiful children we have been blessed with and the hope that others with epilepsy have the same support to start a family if that's what they want.

Benji's first Christmas and the end of 2015

Benji's first Christmas turned out to be pretty great.  Riley really got Christmas this year and it was just so magical to watch her face light up with all the magic of Christmas.  We are starting to build our own family traditions, visiting the Christmas lights, Olympia and making church and the religious side of Christmas which is so important to me fun.

So here are a few Christmas photos, which sum up the excitement of the end of what has been a very eventful year with the arrival of Benji who really does make our little family complete.

 

 

Epilepsy and Pregnancy makes The Sunday Mail

Taking medication during pregnancy is always worrying but for some of us we have no choice which is why it is so important we have all the facts so we can make informed decisions.

I feel lucky that I was put on the safer drugs that carry the lowest risks in pregnancy and as a concequence it seems I have 2 healthy children.

But Epilim has been found to carry much greater risks both with birth defects and neurodevelopment  problems in children so why has it taken 40 years for this information to come out especially as ot was known when the drug was first licenced.

Now don't get me wrong I don't think Epilim should be band in women as I have friends who nothing else works for who don't want children. I don't think they should have to suffer with seizures and having a family is a person choice it's not what everyone wants so it shouldn't be presumed everyone wants kids.

But what is important isgirls and women are not put on Epilim as a first line drug and also the risk to a baby is made clear and effective contraception is given.

It's crucial women with epilepsy are given all the information and nothing is hidden from them so they can make truly informed decisions. That's why it's so good to see it in the papers - just hope all the truth comes out now about all the drugs.

If you want more information about the drug you are on then you can contact the UK epilepsy pregnancy register. It's also crucial to register with them if you are pregnant to make sure we have the best data on birth defects and how these drugs effect our children. Find out more here:

www.epilepsyandpregnancy.co.uk

Riley loves the water ~ and now she can really swim!

So proud of Riley - this term she swam 5 metres indepently (actually she can manage a width which is 7 metres). She just loves the water and next term will get to play with flippers and snorkels. We love aquatots :) Benji starts in January and because my seizures seem pretty controlled I'm going to take him. Very exciting.

A birthday blog! A year seizure free!

Today I am 31, nothing special just another year older...  but today also marks 1 year completely seizure free. I still can't get my head around it as it was only 2 years ago that I came to terms with the fact my focal seizures may never be controlled. I can’t even remember the exact date of my last seizure just that it was in November last year.

So today marks the day I could technically drive again, not that I will because I still don't feel confident that it's controlled. Part of me thinks maybe it's because I was pregnant. Plus even though Benji sleeps better than Riley I still don't feel it's enough sleep and so don't feel safe to drive just yet.

In a few months when Benji is in his own room I will consider driving again but it's scary - I haven't driven in 6 years since my epilepsy was properly diagnosed as focal epilepsy. To just be handed your licence back brings mixed emotions - joy of course that I can have a bit more freedom but also fear of being able to drive and also losing that freedom again.

A lot to get my head round! But the main thing is I am now a year seizure free, the keppra looks like it's working, it's my birthday and the most amazing thing happened this morning. Riley woke up and said 'Happy Birthday Mummy' - she just remembered :) one happy mummy - the best present ever!