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Clare, Derek and the Twincesses

Hi everyone, thank you for taking the time to read our blog, I hope you enjoy following us on our journey as much as we enjoy sharing it.

Clare, Derek and the twinsFirst of all I am Clare Lally, and I live with my partner Derek Steel of 9 years (omg) and we have the most beautiful twin princess daughters called Holly and Katie (hence the twincesses) who are at the moment just over 3 and a half.  After trying for a baby for some time, it was felt our best chance of conceiving would be IVF, so after 2 cycles we were given the best news in the world that we were pregnant,  the following month at our first scan showed it was twins!  I really wish I could have bottled the feeling I felt that day, because there has been times in the past few years that I could have been doing with it!
 
The twins were due on 17th March 2007, but 12 weeks early on the 27 December 2006 my waters broke, and after a long 34hour labour I gave birth to Holly first, she was taking away and ventilated and taken to intensive care, 50minutes later wee Katie was born, there was no noise when they told me I had another wee girl, it was silence! They both weighed 2lbs.  The next thing I knew she was taken in an incubator up to intensive care, while I was taken to recovery.  As a result of the traumatic birth Katie had, and the fact I was not given a section, wee Katie suffered brain damage (PVL).
 
A lot happened in the following weeks, Holly grew stronger while Katie didn't, it was in these weeks that we were told Katie had Quadriplegic Cerebral Palsy, Bulbar Palsy (no swallow/suck).  We finally got the twins home on the 29th March 2007.  What a day that was :-)  Katie has not had an easy time in her wee life and there has been more conditions came to the surface, these are Cerebral Irritability, Duplex Kidney System, Lower field vision impairment, Severe gastro- reflux, Separation anxiety, Behavioural issues, sleep disorder (Katie has never slept at night and very rarely sleeps through the day).  But she is a fighter and a survivor, and I don't know how she does it but her fighting spirit gets her through which is all that matters.
 
Our New Year break at Robin HouseI have taught the twins Makaton, which is so funny and lovely to watch, Holly just loves her wee sister and so caring towards her, Katie just loves Holly, she wants to do things that Holly does but gets frustrated when she can't.  Katie can sit up on the floor on her own for a wee bit, and can bum shuffle on the floor.  These are huge achievements for her, things that we were told would never happen, so please Never say Never!  
 
I am a full time carer and mum to Katie and Holly, she needs 24hour care, and she gets it! She requires frequent suctioning and because of her inability to swallow she can't protect her airway, so she is always at risk of choking or aspirating, so myself and Derek take shifts through the night so she always has someone watching her, and I am with her all day as Derek is at work.  We wouldn't change a single thing about our lives, but what would be nice is if we had more help!  I spend a lot of my time campaigning and fighting for the rights of disabled children, I was awarded Scotland's 'Mum of the year 2010' which was a huge shock but I was so honoured to receive it.  So my job is to help you and your family, which is one of the reasons I am taking part in the diary project, I don't want families out there feeling alone and isolated because you are not, if I can make any difference at all then hopefully for the families that come along in the near future their lives will be a lot easier.

And the fight begins..............

By Clare Lally on 24-Aug-11 21:56.
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Hi Everyone, Jeezo it's been a while hasn't it?  Hope you are all ok?  I always feel when I find the time to do my blog I always have to re-introuduce myself again!  But I have so much to Blog about and to share I just want to get started............

Ok, so the end of my last blog was explaining about w

What spurred on my Campaigning!

By Clare Lally on 22-Feb-11 14:53.
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When we Were told we were having twins obviosuly it was the best news & feeling in the world, we had gone through hell and back just to be blessed with one - let alone been blessed with 2 angels.  Although I shall maybe refrain from calling them angels at the moment until they both realise they are 4 and not 14!

Christmas 2010! Arghhhhhhhh

By Clare Lally on 21-Feb-11 15:21.
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Ok, so these blogs are not going  to be in any order at all - well not until I am totally up to date from October last year - so bear with me ok?.

The title of this Blog says it all - Christmas.  It's the most wonderful time of the year - & I totaly agree with that Andy Williams, well when things go

Happy New Year

By Clare Lally on 21-Feb-11 14:21.
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Happy New Year Everyone.

Yes I am well aware we are now halfway through February - Better late than never.  I really did not want my first blog of this year to start off without acknowledging the festivities :-)  Probably like us at the festive season, things never run smoothly - i'll get into that

Sweating it!

By Clare Lally on 18-Oct-10 18:06.
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Ok, so I have shared a bit about Katie's Respiratory problems that's on-going at the moment.  On the back of all the symptons etc.....

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