Living with Cerebral Palsy 🍋🍋

Sunday, 26 April 2015

Hips don't lie...

On Thursday Elin had her first appointment at Alder Hey in quite a while, for Orthopaedics. Delighted to report that her spine is still pleasingly straight and her right hip, which was 70% lateralised (and thus at risk of becoming dislocated) at our last visit in December 2013 is now only 50% lateralised. It was quite clear on the X-ray- the hip joint was visibly closer to the socket than the last X-ray. The consultant was pretty chuffed with this, as were we of course. Dislocation can be very painful obviously and were it to occur, may require surgery. Surgery entails a rather nasty operation and weeks in pelvic/leg-casts afterwards. I would absolutely die if we had to put Elin through that. Also, our Orthopaedic consultant is dead against operating on kids with Dystonia. He told us this at our last visit too- it's because surgery (and specifically, pain) can increase Dystonia to such a degree that a couple of children he operated on were hospitalised for months following the operation just because of the severity of the Dystonia it caused. It was clear that this had stuck with him as he repeated the story to us on Thursday's visit. Actually, he seemed pretty haunted by the experience, I really felt for him (and the families involved) but also found myself feeling glad that he was just as anti-surgery as we were- it's something I never wanted to consider for Elin and luckily for us it looks like for now at least we won't have to. In terms of the magic retracting hip joint, I am convinced it's down to the amount of work and physio she undertakes at school (and at home too, but admittedly to a lesser degree! I tried to do some work with her yesterday on the pysio roll and she fell asleep!! Doh). So once again we are indebted to the professionals that surround Elin for all their hard work, it really does make a difference. I wonder if her Dystonia, in a twisted way, actually helps this situation too, since we are pretty much constantly changing her position, especially on a bad week. We avoid the temptation to leave her in one position (e.g. sitting in her chair) for lengthy periods simply because it's not an option. So her joints are moving fairly regularly, for an immobile little monkey :-) I guess every cloud does have a silver lining!
Nothing much else to report in Elin-land, we watched a Disney film yesterday and did some playing and then went to Llan for an ice cream today. She's not for sitting again at the moment so my own hips are feeling like they might need imminent surgery to be honest! Each day I wake up at the moment with them aching, especially my left hip where Elin usually sits when I carry her. I got to thinking this morning that I need to be more careful if I don't want to seize up entirely by the time I'm 60, but then I don't know what my alternatives are. Worse, there will come a day when I can't lift her at all and I have absolutely no idea what we will do then, since getting her in and out of her chair a million times on any one trip is generally par for the course. I don't like to think about it to be honest. If only there was a cure for this monster by the name of Dystonia- I would happily take everything else her condition entails if we could just get rid of it!
Anyway lets hope she shifts onto a cycle of sitting nicely again this week- it's certainly due. Have a good week blog fans, it will soon be Friday!

Sunday, 19 April 2015

Another week bites the dust

Last week was a bit up and down for Elin, particularly towards the end of the week. She did manage to do some good work at school but she was VERY unhappy about sitting in anything and a little bit cross with the world! From Tuesday she was especially unhappy at night time and we spent hours up in the night with her three times on the run. In these situations it's really, really hard to decipher exactly what's wrong and that's what's so hard for us- not being able to help.She wasn't 'ill' exactly and  even failsafe Calpol didn't seem to make her more comfortable  (I did wonder if her teeth were bothering her since she was grinding them a lot.) She was generally just very naggy and nothing seemed to help except holding her. It could really have been anything I suppose, from muscles aching to a tummy ache- I hate that we just sometimes don't know what she wants/needs, it's so upsetting.  Happily this pattern broke on Friday night (before Paul and I had to be hospitalised with fatigue!!) when she slept all through the night and woke up right as ninepence on Saturday morning. This was particularly lucky since we had visitors from London staying - my  flatmate from Drama school, Laura, and her lovely fella (they are real, actual, proper actors dontcha know!!) A lovely weekend ensued where Elin got a lot of cuddles, showed off a lot and generally enjoyed having new voices in her house (her face was an absolute picture especially Saturday as she clearly tried to work out why there were voices she didn't know in her room!Such a clever girl). She also demonstrated to our guests how much she LOVES Mr Tumble (which she watches for a bit before bed) and it is a joy to see her reactions, as I've mentioned before a year ago she wouldn't really have paid any attention to a TV- now she clearly listens, pauses, looks clearly at the TV and laughs her head off every time Mr Tumble laughs or makes a funny noise. It really is very cute to see!   So lets hope what was bothering her has resolved itself and she can enjoy a more settled week as she so deserves. I'll keep you informed!

Princess Elin. I include this photo simply because I just think she looks so beautiful on it!! I wish I had bothered to iron her dress before I took it though....DOH (Mummy fail)

Elin and Laura, who comes to see us as often as she can (as do a fair few of my fantastic college buddies) despite her hectic work schedule (she's just finished getting rave reviews for 'Educating Rita' in Sonning and now she's off to do 'Boeing, Boeing' in Oldham!)  . Elin really is a lucky girl to have so many admirers! 

Watching Mr Tumble before bed. Bliss!



Tuesday, 14 April 2015

Once Upon A Dream-Our Disneyland Adventure Part Four (Final Instalment)

If you logged on to read part four of my Disneyland instalments, you probably deserve a medal for perseverance! They have been kind of long-winded haven't they? :-) I appreciate your commitment to the blog and to Elin. At least it stops me from keeping you waiting for half an hour next time you see me as I go through everything we experienced and you glaze over and start losing the will to live, wondering why you ever asked the question 'How was your holiday?'. This way I can be totally trendy (actually I think teenage speak now is 'on point') so.. I can be totally on-point and say 'Read my blog darling!' OH how very modern and technological of me!
Where were we? That's right, I left you at the Spring Parade. Since that was our last day, I think I have actually covered most of what I wanted to tell you (you can all breathe a sigh of relief) I am still dreaming Disney (literally) and still buzzing although mercifully no longer speaking English with a French accent -which, note to self, is deffo NOT the same as speaking actual French apparently (just ask Cailtin about me asking for ice creams at the park. In my head I was Edith Piaf, in reality I was Del Boy " No Magnerms? Zen I will 'av ze Tangelle Twisterrrrrr!!!!"). It's actually a really difficult habit to break- Zut alors!  ( sorry).
Anyway I guess this post should be something of a summary, except it's fairly obvious which way my summary is headed. We had the best holiday EVER. The irony is not lost on me that I feel like Jack on the front of the Titanic ('I'm king of the world!!!') just because I got my daughter to Disneyland and back with no major disasters. I realise that actually perhaps this is quite sad in a way, but I don't feel sad about it. Regular readers of this blog since I started it in 2009 will understand that we have come to accept life with Elin will always be about celebrating the small stuff, things that 'ordinary' families would simply take for granted. This is no exception. But let me tell you having a child like Elin not only makes the lows much lower than any other family can comprehend, it makes the highs much more appreciated, celebrated, lauded, remembered and significant than any parent out there with fully healthy children can ever imagine in their wildest dreams. And that's what Elin does to us, brings to us and makes us realise on a continual basis. So do pardon me, for my rambling posts about our trip, my endless photographs and my tears when I spied a croissant in the Supermarket on Sunday after we came home. It's all been kind of a big deal to us, and we know only too well how it all could have been so very different. We remain eternally grateful to the gods of Disney that it wasn't and we will never forget our holiday of a lifetime as long as we live. Worth every penny, every stress, every meticulously planned detail. Worth it a million times over.
In particular, aside from all the magic of Disney, I think what I loved was the quality family time we got together. That's why holidays are special really isn't it? You're all cramped together for a full week and there's nobody to talk to but each other. There's no distractions, no work, no nothing, only family time. It's a cliche of course but the reason cliche's ever came about is because at some point everybody realised they were true. There really isn't a lot better than a good bit of time with one another is there? With Caitlin turning 18 next year I'm not sure how much longer she will be coming on family holidays (especially not in a caravan in Porth Madog which we will be returning to next year!!!) so maybe the holiday was even more special than the reasons we initially thought about. I will treasure it forever.
To finish, a few of my favourite photo's that I may not have already included. Excuse any repetitions, I can't remember part one now any better than you can (LOL). Thanks for getting this far, thanks for taking an interest in our girl and thanks for reading my blog.

Are you KIDDING? I'm not gong to sleep! We're at Disneyland!!

When you wish upon a star
Makes no difference who you are 
Anything your heart desires..
Will come to you...

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do...

Like a bolt out of the blue
Suddenly, it comes to you
When you wish upon a star
Your dreams come true.




Monday, 13 April 2015

A Whole New World-Our Disneyland Adventure Part Three

If you got through last instalment's rather long post- thank you! Post-holiday blues are most definitely kicking in for us now and Elin and I are having to listen to Disney's Greatest Hits to try and fill the empty gap in our souls that Disneyland fever used to inhabit (dramatic? moi?). We're still a bit prone to getting a bit teary (ok, that's just me not Elin. She is demonstrating her disappointment at being back in the UK by refusing to sit in her chair again, as if last week was a collective dream we all had!) but that's why you take 600 photo's on holiday, right? Looking at them and choosing which one's to share with you lovely readers is helping to lift my spirits :-)
Night time and Fireworks
Everyone bangs on about the Fireworks at Disney don't they? Well, now we understand why. To say they are amazing is a disservice, they are so much more than that. In fact 'Fireworks' isn't even an entirely accurate description . 'Fireworks' are what I watch at Gresford Colliery Club on Bonfire Night. This was a show of epic proportion, of which Fireworks were quite a small part actually. There was also water shooting up some 40 ft in the air, fire blowing from the ground to the same height (in the disabled viewing area you were so close you felt the heat on your skin), perfectly synchronised music, lasers shooting through the sky and projections onto the castle. Oh WOW those projections!!! The castle basically transformed into a giant 'screen' onto which images from several films musical numbers were projected (my faves were 'Be Our Guest' from Beauty and the Beast, 'I Can't Wait To Be King' from Lion King and 'A Friend Like Me' from Aladdin (with the heartbreaking sound of Robin William's voice as the Genie ringing out across the park) . No description can do this justice and it must have been a huge undertaking for the technicians at the park. No wonder it costs so much to get in, this show is repeated EVERY NIGHT of the year!! The castle transformed into a rainbow of colours and the Fireworks themselves were by a mile the best we'd ever seen (sorry Gresford). It really was a 'spectacle' in the truest sense of the word. This kind of thing is obviously heaven for Elin, though it was a little late for her- of course they have to wait for it to actually be dark!! Once again the service to disabled guests was super. We left it too late to leave the hotel and weren't prepared for the sheer amount of people- I'm talking crowds you couldn't even fight through. But we found a member of staff and he basically beat a path through the crowds for us to the disabled viewing area right at the front of the castle. Similarly, a lovely man in the area gave up his seat on a bench for me and Elin, though I refused at first, as soon as he saw me sitting on a blanket he literally insisted. That is actually a good summary of the atmosphere whilst we were there- everybody just wanted to help us and seemed so friendly. Very touching indeed. It's hard to pick my favourite pictures from this aptly named 'Disney Dreams' show but I'll give it a go:

On the one below you can just make out The Hunchback Of Notre Dame at the bottom of the castle-he started at the top on the highest turret and 'climbed' down- amazing projection work! Also not captured were the 'narrators' of the 'Disney Dreams' Firework show, Peter Pan and Wendy who appeared through smoke as giant holograms!!!! It was unreal.

Also, the park by night in general was a whole new world of experience. It looked stunning and again for somebody reliant on their senses like Elin was an absolute feast of stimulation. It took your breath away! We only made the Fireworks as a family once, with it being so late we found Elin was too exhausted by the time it was on. So one night I stayed with her in the hotel room and the next night Paul stayed with her and we both went back into the park at night respectively with Caitlin. This was great fun, not only because we got to see the fireworks again but because, with out the restriction of Elin's chair we got to race around and take advantage of the much shorter queue's for the rides before the Park closed at 10:00pm. Indiana Jones was my favourite and so was the 'Adventure Land' in was situated in, less Princesses and more Pirates!! There was so much to look at, everywhere you turned there was something new. The 'Pirates of the Carribean' ride was pretty awesome here too although sadly no appearance of Johnny Depp :-(

The view from our hotel room window by night :-)

Other things to do
As I have already mentioned, another thing I liked about the Parks was there was always something to look at or listen to. Even if you didn't step on a single ride the whole time you were there, was plenty to see and everything was very authentic, from a huge Pirates Galleon in Adventure Land to a replica French square by the Ratatouille ride. Elin  whiled away a good amount of time over the week in various locations with either myself or Paul as Caitlin took advantage of the wilder rides and she loved it! So many people to listen to, and things to nose at! We all know Elin loves a good nosey...

You didn't think we'd forgotten Sophie did you? Paris is her home town, after all!

Hey yooouuuu guuuyyyys!!! Soon after this photo was taken, Elin did the truffle shuffle :-)

Elin loved listening to the water gushing from the giant scary Goonies-style skeleton head!

It was whilst we were chilling out around the Park that we got chatting to other families, which was useful for various tips (such as, DON'T queue to see a Princess in the Princess Pavillion! It takes hours and you don't know which one you're queuing to see!) For those of you wondering where all the photo's are of Elin with a Princess- I took Kate from Basingstoke's advice and didn't bother. Even though we would have got in quicker, it was VERY hot that day and Elin wasn't for sitting. What really put e off was you didn't know who you were meeting. Elin and I decided if we had humbugged ourselves and been faced with that old sap Snow White we would NOT have been happy. Elin was much more impressed with Mickey and Buzz anyway, since she was the only Princess at Disney in her eyes haha. whilst I'm on the subject of other families, we saw many people with kids like Elin but one family stick out in particular. A boy called Arlon, who must have been nine or ten. He had two younger brothers. He had a tracheotomy and every time I saw his Mum (we kept bumping into them!) she was whipping a tube out ready to suction him. She explained they had driven to Paris all the way from the UK because they could not trust public transport with all his equipment since he was also ventilated via special machine at night. I was gobsmacked. There was me stressing about Elin, and here was this family carrying constant suction and basically putting him on life support every night to ensure he could breathe until the next morning. Their bravery absolutely astounded me and I will never, ever forget them. I'm sure they would not wish to be portrayed as victims anymore than we would, and I don't mean to suggest that they were- it was just a stark realisation for me that there is always, always, somebody out there dealing with far more than you could comprehend, no matter how hard you think you've got it. God bless you Arlon, I hope you had a great week and got home safe and well with your amazing family, wherever you are.

Taking in the scenery (big thunder mountain)

Yet another activity- The Disneyland Express steam train which travels around the whole of the Park on a raised track so the views are amazing. The station we got on at had the most beautiful blossom tree's, the smell was gorgeous and the breeze was blowing them onto Elins buggy. She loved it! So did we.

Finally, for this instalment (and if you got this far hearty congrats, you are a die-hard Elin fan) I must mention the Spring Parade at lunch time. It was so bright, colourful and cheery that its hard to imagine how you couldn't be taken in by the sheer infectious good feeling of it all! Another big tick to Disney for this one ;-)

Until the next (and final) instalment blog revoir!

To be continued........................


Sunday, 12 April 2015

When you wish upon a star- Disneyland Part Two

So you probably gathered from my last post that things went pretty well for us. I'm still struggling to lose that holiday feeling (which doesn't bode well for going back to work this week) and I welled up a bit this morning when I saw a croissant in the supermarket (I'm not kidding). *Must work harder to pull self together* But I guess this is what you want from a holiday! Especially one that cost the equivalent of about three months of my wages, so I'm not complaining!
Unfortunately this blog is tiresomely slow at uploading pictures, so I'm gonna split my posts into sections for you lovely readers and it may take a few days, so bare with me!
As I said, Elin was amazing. Sometimes I think of Elin as her own little Universe. She is a collection of planets, and each planet represents a part of her. So, her dystonia is Jupiter, her sleeping pattern is Saturn, her seizures are Pluto,  her mood is Earth etc etc. Once in a very blue moon, her planets align. When this happens, Elin is the very best she can be (or firing on all cylinders as we like to say). Well, from Saturday, Elin's planets aligned. We think it may have something to do with the re-switching on of the Hadron collider (ha). Although Jupiter did spin off by itself come Wednesday -and I realise I'm now in danger of exhausting the metaphor completely- largely whilst we were on our trip of a lifetime, Elin's little solar system spun in complete harmony and our Universe ran perfectly. How can we possibly have asked for more than that?

Anyway, here is the first section of my 'Disneyland Report'
Eurostar, Park and Rides.
The Eurostar was amazing, we loved it. To be fair we were travelling First Class (it's ok, we haven't turned into Kardashian wannabe's, the only spaces for disabled travellers are in First Class on Eurostar so we got reduced price tickets- BOOM!). There was somebody waiting for us with a ramp before we even got on the platform and the space inside the carriages was great. Not only this but we also got breakfast on the way and dinner on the way back. It was like being on an aeroplane! Check in was quick and easy too. Elin made a little friend called Amelie, a little girl fascinated by Elin who kept bringing toys to show her, so you can imagine she was happy. Amelie's Mum was lovely too and they were staying in our hotel so we kept bumping into them, much to Amelie/Elin's joint delight. I don't know if you know this about the Eurostar but it now runs directly to Disneyland. You literally get off at the station facing the Disney Park gates. Awesome.

Our hotel was situated about a ten minute walk from the Disney Park, in 'Disney Village' (it was all a bit Truman show- it was like another country within a country!) . We looked out onto a beautiful lake with a giant hot air balloon which rose and fell at intervals during the day and provided a gorgeous skyline. We had two rooms which were connected (except for the first night, where we had two separate rooms which were three rooms apart, despite me booking the double-room  'suite' which was supposedly for disabled guests. You can imagine we weren't too impressed with this and I went to Reception to sort it but was told there was nothing they could do until the next day. So we had a bit of a squished Drake camp-out the first night which actually was kind of fun :-) Luckily I did not take the Receptionists word that they would sort it the next day whilst we were at the park, so I went to Reception again the next morning before we went, where quelle surprise they knew nothing about it. I asserted my very best 'teacher voice' and thankfully the folks from the adjoining room had already checked out so we had the keys within ten minutes and the suite was ours. PHEW. However I still do not understand how you can pay for something, book it and then be told it's not booked, so I'll be phoning the travel company tomorrow who advertise as disability friendly holidays, since that was not particularly disabled-friendly!! ) However, I digress. It was a nice hotel with lovely gardens and views and spotlessly clean, though Paul nearly had a heart attack when he realised there was no kettle (it's ok, we got one and BOY did I feel foolish for taking the mick out of Paul for packing UHT and tea bags- we were GASPING most of the week due to all the walking and heat- but there's a tip for you if you are thinking of going! ).
I think entering the Disney Park is definitely a special 'wow' moment. I had a bit of a lump in my throat at the sight of Sleeping beauty's Castle for sure and we got there on our arrival day in time to see the amazingly colourful parade too which was a big bonus.  We took Elin's blue badge to guests services straight away and were allocated a green card- which basically meant we got to the front of the queue for anything which Elin could take part in/go on, including meeting the Disney characters. This was invaluable and we can't speak highly enough of the Disney staff, who appeared to be actively looking constantly for people who may need help and not waiting for you to ask. They treated Elin amazingly. We were very lucky too, as the queue's were VERY long and I found myself wondering how many rides everyone else was actually getting on - but I suppose you just have to accept it as part of the experience. It terms of the rides themselves, there were lots of  Wheelchair accessible ones. Much more than I anticipated actually, which was wonderful. We were able to enjoy so much as a family, which you don't always get in this country. For the more 'white knuckle' rides (my favourite: The rock and roller coaster) Caitlin got to go on most of them twice whilst one of us waited with Elin until we could swop, so nobody got to miss out. The glorious weather made this much more possible and I don't know how different our experience would have been in the pouring rain! But that's like anything I suppose) Elin's favourites were probably the 4D 'Ratatouille' ride, The Studio Tram Tour and 'It's A Small World' boats. We really were impressed with the attention to detail on all of this. Well done, Disney! 

Buzz Lightyear's Lazer Quest and meeting Buzz!

Oh, hi Buzz!!!! (Sadly, the characters do not just walk around the Park anymore like they used to! I would hazard a guess that it's something to do with either them being mobbed by people wielding camera's in this digital age and wanting selfies, or, more cynically, something to do with child protection. Anyway this means if you want a pic or an autograph you have to queue and there is no chance of seeing your favourite characters just hanging about which I think is a real shame! Luckily for us once again our little green card saved the day and Princess Elin didn't have to queue for more than five minutes YAY!) 

It's A Small World Boat Ride

The Special Effects Studio Tram Tour.

Arghhh! Flash Flood!!!!

Aladdin's Magic Carpet Ride and 4D 'Ratatouille' Ride (which was AMAZING)


Fantasyland Carsousel

Watching Lightning Mc Queen's Stunt Show Spectacular....

The above are just a selection of the things Elin enjoyed in the parks, we couldn't always get a good photo when we were whizzing around on something! I was also having a think once I got home of what was good for Elin there, and I realised that you barely notice at first but there are speakers everywhere, filtering music out continually. This means that there was always something for Elin to listen to, which was lovely, but also it kind of made you feel happy all the time!! The main street in Disneyland was gorgeous, all bright colours and bandstands and spotlessly clean. It felt like being on a film set, which I guess was the point. When there wasn't music playing over the tanoys, there was live music for the 'Spring into Spring' theme they had just adopted at there for Easter. Superb !

Elin and her Frozen balloon on 'Main Street'

Eating out- Luckily for us a friend of ours had been to Disney the week before and with some tips from her and another friend as well as just working stuff out ourselves we realised that trying to get to a restaurant past 6:30 was impossible (unless you wanted to queue for an hour just to get a table, which we didn't) This was a slight failing by the park I felt, as it meant to get a quick dinner at a decent time we had to miss the parade each night- we had seen it, but would've liked to see it again. They actually also had a parade at lunch time so we ended up seeing that too which was beautiful, so it worked out, but I just felt sorry for all the kids and parents we saw once the parade had finished standing in lines down the street just to get a burger and chips (vegetables were not a prominent feature at Disney and there were NO supermarkets or Shops ANYWHERE. Obviously designed to make you spend every last penny in the park, but in America you do have a self-catering option. Here, you couldn't even buy a sandwich. I spoke to one Mum who couldn't even buy milk for her baby, and if we'd have run out of Elin's nappies I think Paul would've been back to the train station and making a journey to the next town, which seems faintly ridiculous in a park designed for families) . The other thing about eating was our hotel had a one hour queue for breakfast!! Once again we were saved by Elin and her chair, which meant we got fast-passes and walked straight in. THANK GOD! Imagine queueing for an hour before you got your morning coffee? I would have happily murdered somebody. On a final note- evening meals at the hotel itself were not an option- as we and other families we spoke to found to our cost on the first night when we were too knackered to go anywhere else.  ONE HUNDRED AND FOUR EURO's for three of us to have a school-canteen style buffet! Whaaaaaaaattttt? We nearly choked on our rubbery chicken :-( Anyway, again I think it's just one of those things you have to accept, and the places we did end up eating in for dinner were nice and pretty reasonable, it's just you need to know what you're doing before you go :-) Elin was certainly a fan anyway.......

So that's where I'll leave it for now, blog fans! I have so much more to tell you and photo's to show (Fireworks for one- UNBELIEVABLE) but I'm about to develop repetitive strain and I'm sure that will do for now. Please tune in again soon for part three of our Disney Adventure....for now, have a good night :-)
To be continued.............

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