Friday, 26 April 2013

Nanny's First Day with Riley

Yesterday was the first day I left Riley with Nanny while I was at work.  When Rich and me came in after work, Riley was sitting on Nanny's lap all ready for bed reading a book.  When she saw us she gave us a big smile and wanted a cuddle, but no tears like when we pick her up from nursery.

Nanny said they had had a lovely day, they'd been to The Nest, spent time in the garden and had a walk with Lily dog.  Riley must have been knackered out as she slept from 8pm until 6.30am without a feed, woke for a feed and is now still asleep! (it may help a little bit we've put blackout curtains in her room...)

I am so glad they had such a lovely time and Riley was so happy, at least that's one day of the week I won't need to worry about her being upset and unsettled.  All I know is Riley loves her Nanny :)


Riley loves books...

Wednesday, 24 April 2013

Neuro Appointment Today

So we went up to London for my neuro appointment.  I still feel very lucky to be seen in London, to have such a fantastic doctor who really seems to care and epilepsy nurses I can call anytime if I have worries.  I sort of still feel maybe my epilepsy isn't bad enough to warrent being seen in such a specialist place but then when I look back at my old consultant who's knowledge wasn't great (as proved by the changes made when I was seen in London) and on top of that he was so uninterested in what I was saying I can't imagine having had to discuss pregnancy and motherhood with him, I am so glad I stuck to my guns and asked to see someone else. It wasn't just for me in the end, it was for Riley too.

So anyway we haven't changed anything, at the end of the day I can live with the focal seizures, I have felt a bit dizzy recently after taking my medication but I can live with that too.  The idea of changing onto something else is too daunting to do right now but when we decide to have another baby it maybe something to consider, Riley will be bigger and hopefully my work will be more sorted so the impact of having a seizure would be less, so for now things remain the same unless I have another tonic clonic seizure.

I also had a great chat about the epilepsy action campaign and this blog, it was really great to hear she knew about it and that we're involved.  Made me feel a bit more confident about talking about all of this, hoping that maybe telling my story will help other women feel more confident in becoming a mum, because it is the best feeling ever and epilepsy shouldn't prevent you from experiencing this :)

So things are looking good at the moment, hopefully everything will continue to go well.

EEG for King's College Research Project

I had an EEG today to go with the research project I did a while back... been a while since I've had one, forgot how annoying the glue was!  However I found that soaking it in the bath helped however baths and seizures don't mix very well, luckily Rich was around so I was able to have a nice bath.

They wanted me to sleep during the EEG, wasn't expecting that and I just couldn't sleep.  If I went for a sleep in the afternoon at home it wouldn't be a problem... but in a hospital bed with 2 people watching you and electrodes attached to your head in a 30minute time slot... wasn't going to happen!

Anyway hopefully they will have got some data from it and it might help develop a way of predicting if a medication will work for an individual before they start getting rid of some of the trial and error way in which medication and dose is adjusted at the moment.

Tuesday, 23 April 2013

And she's off ~ crawling :)

Well the bad news is that Riley was ill over the weekend :( she had a temperature of 39.2 after Calpol and Nurafen her breathing was really fast and she was obviously in pain. We ended up having to ring 111 the out of hours GP and took her into Epsom hospital. They said everything seemed ok so it was just a virus. She's bounced back now and is back to her normal self.

Anyway, while being in just a nappy all weekend she started to crawl, only a little way at the moment but she's getting better all the time :) and best of all she can get from lying to sitting on her own. Alot less picking up for me and she's alot less frustrated :)

Very exciting!

Monday, 22 April 2013

Warnings... or lack of!

I know my epilepsy is pretty well controlled and I feel very lucky for that but I still worry about it sometimes.  I guess that because I seem to go a year or 2 without one I still sometimes feel a bit scared about having one as it's only been 18months... but as time moves on and I only have small focal seizures very occasionally I know that my confidence will increase.

I think the worst bit is the fact I have no warning before having one... even if I had just 30seconds I could at least get somewhere reasonably safe and most importantly make sure Riley's safe.

I guess if you put it into risk assessment terms the risk of it happening is low but the impact if it does happen is high, a warning would reduce the later... but I don't get a warning so I try not to dwell on that too much, but sometimes I find people asking the question and when I say I have no warning looking so concerned and sometimes almost wanting me to say that I do just to make them feel better.

I remember going to a gym which I was refered to through my GP and at my induction they asked me if I got a warning and when I said no she asked are you sure??? Then ended up basically saying I could do very gentle exercise on the bikes and things and a few stretches but not to do too much... I felt like I was such a risk to them that I never went back.  I can do more at home and would rather just go for long walks to get some exercise.  Now I have Riley I walk so much that I think I keep pretty fit and have certainly lost my baby weight :)

Tuesday, 16 April 2013

Cutting Out Night Feeds

We are cutting out Riley's night time feed... it was getting to the point where I was feeding her every 3-4 hours at night, we figure she is old enough to go longer than that and sometimes she does on her own accord so we figured we should make it more consistant especially with me going back to work, if I stand any chance of still breastfeeding it needs to be a bit more consistant.

So the plan is she has dinner between 5.30 and 6ish, then a feed at 7 before her bedtime routine.  I then wake her up (or she quite often wakes up of her own accord) at 10.30 - 11pm when we go to bed to give her a feed.  Then she doesn't have another feed until 6ish when we wake her for me to go to work if I am on an early or whenever she wakes herself if I don't have to go to work...

Well Saturday and Sunday night she did this herself, she didn't wake at all but last night she woke up at 2.30am, we did controlled crying and she didn't really scream, she just kept stirring and having sort of 10 minutes of crying then going quite until about 4.30am when she fell asleep until 8am... but she wasn't ravenously hungry then, we had a little play and then went down for breakfast... so it was sort of successful, think we just need to stick with it.

Back to Work ~ Perceptions Change

Well I'm back to work and I don't know whether I have ever really said what I do... I work in a rehabilitation unit for children and young people who have had a brain injury.  They can be any age from 0-18 and can have suffered any injury to any extent.  So it is a very varied job.

Going back to work as a parent has made me look at the children and their families from a slightly different angle.  I didn't think it would make a difference but I feel it somehow does.  I think I put myself into their situations a bit more, don't get me wrong I can't begin to imagine what the families are going through.  But I can't help thinking what if that was Riley?  How would we cope?  I don't think it makes the job any harder and I still really enjoy work, I think it just adds a different dimension to situations.

I have always been so inspired by the children and families I work with, they have such huge challenges to face and they work so hard, I don't know how they do it, but I hope we help to support them as much as we can.

Activity Folder ~ for all the amazing places we've been

We've started an activity folder for Riley, basically we've written a list of all the exciting places there is to go for a day trip.  We've written down all the ones that come up on your things to do websites but they all tend to cost quite a lot of money so we've also found lots of cheaper places, walks and parks to visit.  Everytime we go to one we're going to do an information page for her folder and then we'll have a collection of all the good places to visit :)

Here's a list of a few of the places we've already visited:

Brighton (Aquarium and Pier)
Rottingdene Beach
Tilgate Park
Box Hill
Newlands Corner and Silent Pools (near Guildford)
Morden Hall Park and Dene City Farm
Tandridge, Dorking and Epsom Swimming Pools
Thames Ditton Miniature Railway
Chessington Aquarium
Woodcote Garden Centre
Llama Park (Ashdown Forest)
Lookout Discovery Centre Bracknell
Bird World
Godstone Farm (as shown)
Bocketts Farm
Tulleys Farm (she loves animals thus the strong farm theme!)