Living with Cerebral Palsy 🍋🍋

Sunday, 31 May 2015

Standing tall

A nice end to the half term for Elin-she's a happy girl! Even been in standing frame- which I think may need adjusting again asap, she seems to have grown a great deal lately!

There's an Elin in our garden!!!!

Back to school this week, which I'm sure Elin has missed! Hope you blog fans have had a good weekend. Rumour has it the sun's coming out soon.........yipee.

Saturday, 30 May 2015

Footnote... previous post: The Urdd Eisteddfod committee are sending Caitlin all expenses paid to DISNEYLAND PARIS for three days next March so she can sing in the St David's Day parade, so pleased were they with Thursday performance!! OH WOW!! Nobody tell Elin!!! *furiously googles flights back to Disnyland*

Friday, 29 May 2015

Caitlin's a winner!

Total plug for big sister on Elin's blog today! Yesterday she made stage at the Urdd Eisteddfod in Cardiff for the musical theatre solo, which meant she was down to the last three from the whole of Wales!!! Not only that, but she only went and won it!!! I know there are a few Caitlin fans reading this blog so hopefully this link to her performance will work. Even we are stunned by how good this is to be honest, the critics in the S4C studio were raving about her afterwards too- so I feel justified in bragging! The song is 'I know where I've been' from Hairspray- the Welsh version!! The way Caitlin builds the song to the amazing ending is just awesome. And there's a little girl here at home who is enjoying listening to this voice she loves best on repeat this morning, too :-)

Thursday, 28 May 2015

Half Term

It's been a bit of a quiet one so far! By quiet I mean a bit boring to be honest! We were certainly hoping for better weather here at Drake Towers- you know with it being basically Summer and everything!!! As it is I've had to dig out my boots and Elin's largely been wearing her winter wardrobe all week, how sad!! Fortunately though cold it's not been too rainy so Daddy Drake has been able to get some decking down in the garden- quite when we are going to get the chance to enjoy said decking remains to be seen!
Elin's had a couple of visits to Children's Ward this week- nothing major except her Mic-key button is very red and sore. A swab brought back nothing, but the doctors were a little stumped given that it's not leaking and is very dry. It's just very red and sore looking! Bless her. It's been this way for a while and did look like it was getting better at one point but was very red again by Sunday, so off we toddled to see what we could do for it. Nothing much it would seem, we're now trying a third type of cream to see if that combats it! Nobody wants to spend three hours in hospital on bank holiday Sunday but I've gotta say we had a little treat seeing some of our most favourite Nurses.  And Paul missed Liverpool being thrashed 6-1 so not all was lost (even though it was Stevie G's last game). We went back yesterday as advised as it still isn't better and thus we are now trying a third cream. Fingers crossed! At least it's not infected, we definitely didn't want to enter antibiotic territory!
So aside from having and icky micky, Elin's world has been a quiet one this week. She's been fine in herself although not for sitting at all hence the reason why we are somewhat housebound! We braved town but ended up being pinned to various chairs and benches as she really wasn't a happy bunny in her chair (I could probably map out Wrexham in relation to where all the benches are now I think) and she has been to visit her little friends Mollie and Rosie. She also had a visit from my Nanna and Grandad and has been enjoying some Disney film watching, though we did get outside in the garden yesterday-hurray! More of that please, Universe!
I'll leave you with some pics and remain optimistic that we might see a bit more of that yellow ball in the sky- which we may be able to admire from our new decking- and wish you all a very happy half term!

Elin and her Great-Grandma Alma, who brought her some Frozen socks, which Elin was pretty chuffed about. Pretty down with the trends for an 81 year old!

Elin and Mollie, who is three. Elin took a while to chill out at Mollies house as she had been in the dreaded car but once she did they had fun! Elin especially like Mollie shaking her pom-poms for her and stroking her face :-)


Elin watching 'Cinderella' on the laptop with Mummy. Yes, I know i could have used the iPad but it makes my hands ache. When we win the lottery Im going to build Elin a 'Cinema room' with a screen that goes all the way down to the floor so we can lie and watch Disney film when the weathers bad or when she's not up for doing much. Yay! Oh- that reminds me. I need to buy a lottery ticket.

Elin was extremely optimistic with her choice of outfit this morning. I predict she'll be back in her  jeans by midday. WHERE ARE YOU SUNSHINE?????


Saturday, 16 May 2015

That's the spirit....

Hi blog fans...if my blog was my baby I would be a pretty neglectful Mum! Can't believe how quickly the last week has gone. It's been another dodgy week for Miss Elin. We didn't see any smiles for the first half of the week and her dystonia was pretty bad. I kept her of school on Tuesday as she just hasn't been sleeping at night and was exhausted. She actually hasn't slept well at night for almost a full week now-it's the longest run of sleepless nights we've had in a while! You can't really describe that feeling of having to keep going even though your eyes keep closing themselves but suffice to say it's not pleasant- and that's just us so god knows how she was feeling poor thing. ANYWAY as we know with Elin, there is always a corner waiting to be turned and it looks like she's turned it if today is anything to go by. I noticed she was perking up on Thursday and she was much less dystonic at school yesterday. Today, she has been delightful! I could tell it was going to be a 'good sitting' day so we went to Chester and she was as good as gold, she only got dystonic in the chair once and we managed to calm her down and she continued her good sitting-hurray! She was rewarded with a trip to the Disney store (which was in no way a treat for me you understand) and we had a great time choosing some presents. She picked a noisy Frozen book, some star-shaped glasses and a Little Mermaid swimming bag to take her cosies to school in :-) I think she might have thought she was back in Paris with the soundtrack in the store and all the merchandise! (SOB!) We also had the pleasure of meeting a very nice completely smashed drunk man who smelled so strongly of spirits that I started to feel a bit hammered just standing by him. His partner seemed completely oblivious to this, unless she was completely ratted herself-who knows? I have no idea why they were wandering around in a Disney store but anyway they were quite taken with Elin, questioning us a lot and patiently listening whilst I explained how she liked the music and lights in there. I mention them soley because they were actually my first experience ever of a stranger asking me directly what is wrong with Elin (or as the fella so eloquently put it as he indicated a wobbly finger towards Elin "What is it?"- I assume he was referring to what Elin's condition was and not what Elin ACTUALLY is cos I answered 'She has Cerebral Palsy' rather than 'Oh this? It's a small human, commonly known as a child' and he seemed to accept my answer). So it struck me that maybe everyone who isn't walking around completely sozzled out of their wits hasn't got the dutch courage to inquire about why Elin is like she is. It's understandable, but a shame. I don't mind people asking at all, I prefer educating to ignorance. So in a twisted way it was quite nice, even if the only person I have been able to educate in the past seven years was so drunk he was sweating vodka.
Anyhoo following our Disney visit we had a further mooch around. Paul managed to take forever to decide whether to buy a new jumper or not because it was 'a bit pricey' -until I pointed out it's not really pricey when you buy roughly one new jumper every ten years -but Elin was amused by the jumper shop and my quiet rant whilst he was painstakingly parting with his cash so it was all good :-) Haha. We went for a coffee (huge disappointment ensued for me here- do NOT EVER choose iced cafe latte from Starbucks its gross) and enjoyed the feeling of walking around with a happy Elin for a bit longer before we decided not to push our luck and come home. This evening Elin has the very dubious job of keeping Daddy company whilst he watches Steven Gerrard's last game for Liverpool- I am, of course, not going to choose to be in the house during this time and instead am going to take Caitlin to the Cinema which we haven't done in absolutely ages. So a nice day all round for us today. I hope you blog readers have had just as good a Saturday and that your Sunday goes well, too. I will leave you with a photograph of Elin I took in the Disney store with a couple of her purchases....
We really will never stop appreciating the small stuff. She's just going to enjoy a little resonance-board play now (see post history 'Good Vibrations') and then some physio whilst she's in a good mood (but shhhhh don't tell her). 
Have a good weekend, folks. Thanks for caring about our girl


Friday, 8 May 2015 Friday..

Elin's not had the best couple of days. After what looked like the long-awaited beginning of a 'good spell' was starting, the dystonia simply returned and took over again within a day. It's been a long 'do this, I'm trying to hold my nerve. Poor Elin. Not a happy bunny today, although mercifully we did get some gigantic smiles before bed. Let's assume it is her way of protesting against the fact that as of this morning, all public sector workers and those who benefit from their work are essentially screwed. So disgusted is she by last night's results, I think it's set off her dystonia! Whilst I go to squirrel away some savings into a special 'paying for Elin's medical care now the NHS is inevitably going to crumble around us' bank account and look for another job (as I don't fancy working in a private academy for a crappy wage alongside unqualified people who think they can teach because they enjoyed finger painting and baby yoga with their own kids) I wish you the best weekend and please keep your fingers crossed Elin improves again ASAP!

Monday, 4 May 2015

Good Vibrations....

Elin on her resonance board.  A natty little Betron speaker in the spotty tin plays all her favourite tunes and resonates across the whole wooden board so she can 'feel' the music in her body as well as hear it :-) She also has one in school and responds just as well there too. She loves it! We can also add rhythms on the board to enhance the experience for her. A great example of the simplest idea producing such effective results. Amazing! Now, we're just waiting for Daddy Drake to finish mowing the lawn (borrrrring!)so we can get out in the fresh air and enjoy our Bank Holiday at Ty Mawr or somewhere fun! Hurray!


Saturday, 2 May 2015

This week our very own Royal Princess has been mostly...

..Earning a Top Banana sticker for good work at school with her switches (YAY!), refusing to sit in her chair (STILL!) and visiting one of her favourite places in the world- the hairdressers!!
Oh- she also managed to squeeze in some sunbathing on the decking earlier on in the week....
..and today enjoyed a visit from my buddy Vicky, her little girl Megan and Megan's favourite old toy doggy, Pippin...
We have a family christening tomorrow to look forward to, it would be nice if she decided to sit in her chair for this special occasion, especially since my hips and back are getting worse by the day! Anyway I'll have to keep you updated on that one... I'm off to stare at the doors of the Lindo Wing for just a little bit longer whilst the ITV journalist speculates on whether it is Prince George's bedtime or not and whether the Queen is wearing pink today on purpose.......haha.
Have a great bank holiday weekend all!
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