Tap2Tag

One of the people who was presenting at the Epilepsy Action weekend was tap2tag.

Tap2Tag is a new way to carry your emergency medical information.  It uses NFC technology which most new phones now have.  All you have to do is tap your mobile phone against the bracelet or keyring and it will bring up the persons name and an emergency message on the mobile phone.

This simple video says it all:

This is a fantastic product which could make a huge difference to people with epilepsy.  They are also about to release a young child's size wrist band which I will get for Riley so she can wear one in case I have seizure and she runs off.

Potty Training

We have been trying potty training for a couple of weeks but it has not really happened.  She doesn't really ask to use the toilet so it has meant the only way to stop her having lots of accidents is to keep sitting her on the toilet.  I think she's then just got fed up and her behaviour has started to deteriorate.

I'm not sure whether she has full bladder control and either way she doesn't seem to want to use the potty so we have decided it is best just to leave it for a few months and come back to it.  It's Christmas coming up and we just want to enjoy that time together as a family.  She's not even 2 and a half yet, potty training can wait, for now we just want to enjoy time as a family.  I don't want it to become a big thing.

The one thing I would say is that you are given so much information about breastfeeding and weaning etc etc but when it comes to potty training there isn't that much guidance, people just sort of say "you'll know when they're ready" which hasn't really been what we have found.  There is no real way of going about it... no advice as to what to expect.  But anyway it hasn't happened first time around, but never mind, as Riley's book says "all potty stars need practice - no-one's perfect straight away!"

Epilepsy Weekend For All

I feel really bad as I haven't got round to writing about the Epilepsy Action Weekend for All which I went to last weekend.

The last week has been a bit of a blur, I have just had so much going on, from adoption to seizures, potty training to just being really tired... I have just got so much to blog about but just haven't had the time to get it all down on paper.  So here goes... I will be writing individual posts about some of the topics which were brought up over the weekend so I want this blog to be a short overview of the weekend.

The main thing about the weekend is that it is such an opportunity to talk to others with epilepsy.  It's a chance to catch up with old friends and make new ones.  In day to day life you just have to get on with things, epilepsy affects so many areas of our lives but you just have to knuckle down and get on with things as best you can.

The weekend gave me a chance to hear what other people both struggle with and are achieving.  It made me feel less alone, gave me inspiration to really go for the things I want and also gave me a chance to reflect on some aspects of living with epilepsy.

There was a girl there who has a lot of seizures, but she really inspired me, she doesn't let it stop her from doing so many things, from traveling on her own to riding her horses, it made me realise I need to really go for my dreams.  So the two things I really want to go for this year... training for the marathon and trying to adopt.

It also made me think about the way I treat the people around me, it made me think about the impact my epilepsy has on my Mum and Rich.  I think sometimes I don't think about them enough, I don't realise how hard it is for them.  Talking to people who don't have epilepsy themselves but their loved one does made me think about things a bit more from their point of view.  I think it is something I need to work on.

But generally it was a weekend full of lots of information and fun :)

Learning to live with the new me...

Now this is going to sound strange… but as I am weaning off the Lamotrigine I am starting to feel different.  It was my sister who put things in perspective for me last week.  She asked how the med change was going and when I said OK but I feel like I am a bit moody some of the time.  She then said she thought I was much more like the old me, less zoned out and more aware of the world around me.

Then suddenly I could see it, what if this is what normal people are like, what if I have been so dosed up on Lamotrigine (which at the end of the day is a mood stabiliser) for the past 10 years that I have just been not quite experiencing the highs and lows of life.  Feeling a bit annoyed when people don’t seem to give a damn, being grumpy when I’m tired, getting frustrated… maybe that is all normal.

And all of a sudden I have realised I am think more, that probably sounds a bit crazy but if I am walking somewhere I find my thoughts are moving quicker.

All this increased mood and thinking is taking some getting used to, it makes me feel really tired by the evenings and I find it hard to put sentences together sometimes because I feel like I can’t keep up with my thoughts.  But I am feeling so much more alive, I think I just need to learn to order these increased thoughts and control some of my moody moments.

I just hope this is normal and not just that this fast thinking is a sign my brain is working overtime and it’s just a matter of time before I have a seizure…

But for now I am just going to enjoy being a little bit more alive :)

Me before I was diagnosed with epilepsy

Our adoption journey ~ another step forward

We got accepted to move forward with the adoption process!!!  Apparently about 50% of people get turned down at this point.  Now they are not saying my epilepsy won’t be a problem, not over that hurdle just yet but I don’t think they would be so enthusiastic for us to move forward if they thought it was going to be huge problem… anyway we will see.

I’m not going to be able to talk too much about the process I don’t think but I will put little updates along the way, it is an exciting journey but scary at the same time, there is a lot to consider.  I guess it’s a roller coaster a bit like our journey to parenthood biologically with Riley was.

Run or Dye...

I did it! I ran 5k without walking and without having a seizure.  It was very relaxed and just a lot of fun and I have to admit I am pretty proud of myself.  I did however suffer a little the next day and so because I have proved to myself my brain can cope with a 5k I am now going to start training properly and hopefully get back into this running thing, maybe even run the 2016 Marathon...  So here goes nothing… going to be doing the couch to 5k training programme for the next 9 weeks 

Finally a buggy with a dead break :)

So it's a bit late for me but finally a buggy manufacturer has done it... produced a buggy which has a dead break built in and the buggy looks fantastic.  Well done Phil and Ted's :)

Here's the key features:

• auto stop braking system: safe & convenient
• 26 riding options to accommodate 1 or 2 newborn babies up to 2 toddlers
• rear facing double kit option
• attach 1 or 2 car seats
• cleverly engineered 'kerb pop' for ultra light handling
• lightweight at just 12.5kg and 59cm narrow
• one hand fast fold & automatic frame lock
• easy adjust tail-free 5 point safety harness with shoulder pads for comfort
• multi height adjustable handle with comfort foam grip
• premium fabric
• deeper, taller & easily removed main seat
• seat back length: 64cm 
• multiple seat positions from lie flat for a newborn baby to fully upright
• follow-the-sun hood with handy storage pockets
• one hand double kit recline
• moldable neck support on double kit (sold separately) for a younger baby
• large shopping basket
• 12” air filled tyres
• durable & easy clean plastic footwell 
• 2-mode front wheel for multi terrain: swivel or lock straight

Here's the Phil and Ted's video... 

now I can see what they are getting at but checking your phone as you push your buggy towards a railway track or adjusting your sunglasses as you walk along a sea wall... seems like irresponsible parenting to me... sort of highlights that any parent can have an accident with their child and actually because we have epilepsy we are more aware of these risks and plan better...

Anyway I'm getting away from the point... this looks like a fantastic buggy and at £449 it isn't ridiculously expensive either compared to other buggies.

And here's the link to the online shop:

http://philandteds.com/uk/Buy/push/navigator-Buggy#.VC2u4PmwL-s