Epilepsy Weekend ~ Mixed Feelings

Well it's the Epilepsy Action weekend for all in 2 days time.  I'm really looking forward to it but at the same time I'm a little bit nervous...

I've written something for the 15minute presentation I'm giving on my experiences and that's the bit I think I'm most nervous about, but hopefully it will go well.  I think I'm also a bit nervous about spending the weekend away from Riley, it will be the first night I have spent away from her and that comes with mixed feelings, it will be nice to have a whole 2 days doing something for me but at the same time I know I will miss her...

But the most exciting bit is that hopefully I'll meet lots of women thinking of being mum's, women who are pregnant and new mum's and will be able to start up some sort of network for mum's to support each other.  That's the plan but even just meeting a few women will be fantastic and I think I'm going to learn a lot from the midwife, consultant and epilepsy nurse, so that is exciting too.

I'm also going to be representing Youth Health Talk (which I have spoken about in one of my recent posts) but also the Brain Injury Hub which is the information resource which I am involved in at work.  I have never really talked much about the specifics of my job but I work for a charity called The Children's Trust which is supports children with brain injury and their families.  One of the services they provide is the Brain Injury Hub, an online parents resource, and I am the online community coordinator for that.

www.braininjuryhub.co.uk

There are workshops for young people with epilepsy and a creche at the weekend and so there maybe parents whose child has had a brain injury and suffers from epilepsy because of it. If premoting the hub there only helps one parent it is worth taking the information and talking to people about it.

This will be my last post before the weekend so I will let you know how it goes next week.  Hopefully I might meet a few of you who have been reading my blog.  The one thing I can't believe is how many people want to read my story and hear what I have to say on Twitter and I just want to say thank you so much for all your support and helping to spread information and support to as many women as possible.

Row, row, row your boat...

Riley loves singing songs and she's starting to get really good at the actions too.  Her favourite few are...

Wind the bobbin up
If your happy and you know it
Sleeping Bunnies (if you have never heard it, here's a yout tube video with actions!  All kids seem to love it!)

Sleeping Bunnies

And then there's the old classic, she loves to grab other children's hand and try to play row row row with them even if they don't want too!  Here's some alternative verses to make the constant repetition a little more bareable...

Row row row your boat...

Gently down the stream, merrily merrily merrily merrily life is but a dream
Gently down the stream, if you see a crocodile don't forget to scream
Gently down the river, if you see a polar bear don't forget to shiver
Gently down the creek, if you see a little mouse don't forget to squeak
Gently to the shore, and if you see a lion don't forget to roar
Gently to the land, if you see an octopus always shake his hand
Gently through the cave, if you see a jellyfish don't forget to wave
Gently across the sea, if you see Riley give her a kiss from me
Gently down the Nile, if you see a camel don’t forget to smile
Gently over the lagoon, if you look up to the sky you will see the moon
Gently out to sea, if you see a big blue whale invite him home to tea
Gently in the bath, if you see a tall giraffe, don’t forget to laugh

TV ~ In the Night Garden

Riley doesn't watch much TV.  I'm not obsessive about it, she can watch some TV, but I try to keep her busy with other things and as we like to get out and about so much it's not hard to avoid much TV.  That's another thing about not being able to drive it does tend to take longer to get places and so leaves less time hanging around the house!

One thing Riley does tend to watch is 'In the Night Garden' as it's on Cbeebies just before bedtime and after dinner.  A few days ago Riley was eating dinner a bit late and Cbeebies was on it the lounge.  If you have never watched in the night garden it begins with some twinkly stars with music and then a parent tracing a circle on a child's hand.

Anyway she was sitting eating her dinner when all of a sudden she put down her spoon and started tracing a circle with her finger on her hand.  I wondered what she was upto when I realised 'In the Night Garden' had started and she'd heard the music and started the actions...  maybe she's watched a bit too much of it!!!

But I'm going to put it out there... what if 'In the Night Garden' is a clever way of indoctrinating our children, maybe there's some hidden message in there and the next generation will be programmed like robots by Iggle Piggle, Makka Pakka and Upsy Daisy... or maybe not!!!

Tempertantrums!

Riley's definately developing her personality and she understands most of what we say, but she gets frustrated that we still don't always know what she is saying.

With that comes tempertantrums!  We had the first major one a few days ago over her dinner.  She'd been on antibiotics for a week before so I had given her the benfit of the doubt that maybe they'd upset her tummy so she didn't feel hungry so had been giving her fruit which seemed to be happy with.

She finished her antibiotics on the Tuesday, went to nursery on Wednesday and ate and ate and ate there and on Thursday at dinner time she just pushed her dinner away and pointed at the fridge.  Well I said there was nothing else and she could have a yogurt when she'd eaten her meal, so I put her down and she screamed and screamed and screamed.  I sat with her and spoke to her calmly so she knew I was there and when she calmed down a bit gave her a cuddle.  She then pointed at her dinner and proceeded to eat all her dinner and then a yogurt...

It was hard to stand my ground but I did it... I won that one, but I know there will be many more... some we will win, some we will lose!

Youth Heath Talk

I've never really talked about Youth Health Talk and it's a website I believe is really making a difference and something I have been involved in for a while now.

http://www.youthhealthtalk.org/Young_people_with_epilepsy/

It is a website made up of clips of young people talking about there experiences of health conditions, it aims to be a resource that tells people the fact around conditions in a real way giving people a better understanding of what it's like to actually live with a condition.

I first got involved when I was interviewed for an epilepsy module (see if you can find me!). I then was asked to be on the youth panel which helped shape the website giving ideas for new modules and the website design.

It's about to be relaunched which will be exciting.  There's also a site aimed at adults with health conditions called health talk and there are some videos on the epilepsy a couple of sections about women and pregnancy which are worth having a look at.

http://www.healthtalkonline.org/Nerves_and_brain/Epilepsy/Topic/1658/

http://www.healthtalkonline.org/Nerves_and_brain/Epilepsy/Topic/1659/

What's Riley been up to? Here goes...

Riley’s definitely walking now!  And she loves it!  She has got really fast and can get into extra trouble now and the things is she knows when she’s doing something she shouldn’t be doing because she gives you this huge cheeky grin!  And then you can’t help but find it funny most of the time!

The other good thing is she is getting much less clingy at toddler groups which is fantastic because she always used to just cling onto me and wouldn’t go off and play on her own.  She maybe a bit shy but she’s certainly rough and tough, she got hit by one of those plastic push along cars twice yesterday and she didn’t cry.  It’s good because you know if she does cry she’s actually hurt herself.

She’s had her first course of antibiotics as she has had a chest infection and I think considering she has been ill so many times is pretty good going!  She is such a good girl though, when we went to the doctors, he was running 30 minutes late so when we eventually got in there she sat quietly while he listened to her chest and then let him look in her ears and throat without any complaining.  He said she had a bit of a chest infection gave us a prescription, Riley said bye bye and we were in and out in about 5minutes!

What else… she has settled much better at nursery now.  The girls there say she makes them laugh because she chases all the boys around trying to hug and kiss them, but they don’t like it!  Not sure what that says about her!?!

London Epilepsy Weekend for All ~ 1st - 3rd November 2013

In a couple of weekends time it's the London Epilepsy Weekend for All and it looks fantastic.  It's a weekend full of presentations and workshops by professionals and people with epilepsy.  It will give people a chance to ask lots of questions and meet people in a relaxed environment.

It's for the whole weekend, people can go to one of both days, stay there overnight and even arive on the Friday and stay all weekend.

There's going to be information sessions on both days for women thinking about starting a family, pregnant women or new mum's.  There will be more on the Saturday as their will be a specialist epilepsy midwife there and a consultant, but I'm going to be there both days to share my experiences and answer question if I can.  There will be lots and lots of other useful information sessions but from a pregnancy and parenting point of view this is what is happening:

Saturday

11.30am to 12.10pm Kim Morley – Epilepsy specialist midwife.  Speaking on pregnancy planning, care and delivery; caring for your baby.
12.15pm to 12.30pm Clair Cobbold.  Epilepsy and motherhood – a personal perspective.
12.35pm to 1pm Dr Cock; Kim Morley and Clair Cobbold - question and answer session on epilepsy pregnancy and motherhood / fatherhood.
2pm - 3.30pm Pregnancy planning and management; care for your baby and a mums’ network with Kim Morley ESN and midwife and Clair Cobbold Epilepsy Action volunteer and a mother with epilepsy featured in the Pregnancy diaries.

Sunday

2pm to 3.30pm Pregnancy planning and management; care for your baby and a mums’ network with Shelley Brett Epilepsy Specialist Nurse and Clair Cobbold volunteer with Epilepsy Action and a mother with epilepsy featured in the award winning Pregnancy diaries.

Looks like a really great weekend for anyone interested in epilepsy.  I'm hoping it will be a chance to get lots of mum's and mum's to be with epilepsy together to spreead support and maybe start some sort of support network.  Hopefully see you there.  Click below to book your place:

https://www.epilepsy.org.uk/involved/information/weekend-for-all