Living with Cerebral Palsy 🍋🍋

Saturday, 31 October 2015


Well Elin has had a half term holiday haircut- and not before time! She was starting to resemble Rapunzel! She was quite impressed with the end result, I think you'll agree she looks beautiful. The second half of half-term has been pretty quiet for little Miss- we think she has really missed the stimulation of going out to school every day and seeing all her friends and teachers . She did however manage some trick or treating with big sis Caitlin and her boyfriend Connor and managed well in the borrowed buggy too as we roamed the misty country lanes in search of candy :-) She also enjoyed the Elsa pumpkin i craved for her (Yes! I actually did carve it despite some of my friends thinking I had stolen the photo from the internet!! How rude! Was actually pretty easy using a stencil I printed off from a website even for someone as crafty as a gnat like my good self)  Hope you've had a good Hallowe'en blog readers, until next time......


Thursday, 29 October 2015

Oh brother!

A good few days for Elin over half term! We did end up going to the doctors with her eye, which we've had drops for but it is looking better already. We're also still waiting to hear about her wheelchair being fixed...but that has given us more time to road test the Chunc 45 which was given to us as a 'spare'.  Taking visiting family to Chirk Castle provided ample opportunity for this! First of all we had the usual thrashing around and dystonia. So, out she came for a break and a cuddle on my knee then back in she popped ...where she stayed as happy as larry for the rest of the day out! Yippee!  She thought she was queen of Draketon Abbey sitting in the front room of Chirk Castle showing off her new wheels! To top off a perfect day out we also bumped into our favourite doctor EVER, who had attended to Elin when she was born and in the harrowing weeks that followed. We have continued to bump into him over the years in the hospital and he is so humble, he hates it when we make a fuss of him but to us he is the doctor that saved her life (and our sanity, being the first doctor to prepare us for what lay ahead as opposed to just saying everything would be ok, which it clearly wouldn't). It was great for him to see her looking so happy and relaxed out with her family and it was great for me to be able to tell his wife that her husband saved my little girl's life :-)

Lady Crawley!!

Sunday lunching
 Elin and her big brother Tom - getting his fix of Welsh air visiting with gorgeous girlfriend Hannah from London ;-)
 Tom and Hannah having more cuddles :-) Elin loves having family stay - a nice change from our boring voices/faces methinks!

Family :-)

Happy hal term folks! Elin is very much looking forward to trick or treating- photo's to follow at the weekend! 

Friday, 23 October 2015

Autumn days when the grass is jewelled

                                                         Did someone say half term? 

Well, monkey-face has not stopped grinning today, despite a case of weird-red-eye-thingy appearing yesterday! She's not been completely right since her illness last week so it's been gorgeous to see her so happy, clearly the weird-red-eye-thingy is not bothering her though if it isn't gone soon we'll need to get it looked at! It never ends! Not a bad week although sadly Elin's chair broke the other day which was a bit sobering as you realise that without her dreaded chair, much hated by her as it is- you can't actually get her anywhere without it! It's daft to say, but honestly when you have a disabled child their chair is such an extension of them (because it has to be) that when you suddenly don't have it you feel quite stranded and weirdly vulnerable!!! I have to say hats off to the wheelchair service who sent a repair man out the very night we called, though the guy could not fix it on the spot :-( So they took the chair away and told us to call for a replacement in the morning which would be whatever they had available and probably nothing like Elin's chair (which was made especially for her and moulded to her body). LUCKILY a wonderful Mummy we know with a son like Elin had a 'spare' chair hanging around the house and offered it to us straight away. After a couple of hours of Daddy Drake attacking it with his allan key and oofing Elin in and out to ensure a good fit, she had a new makeshift chair- the 'Chunc 45' (apparently worth a lot of money) and I got to tell you blog readers we LOVE it! (So far!) Photographs of her in it will hopefully follow this half term! I feel a call to wheelchair services coming on ......
Anyway aside from a broken chair (Elin) and a broken windscreen (me) it's not been a bad week. I can hardly believe it's half term - it's crept up on me I think because September was so sunny!!! I'm not complaining,  because I know how lucky us teachers are to have time off with our kids so regularly- I love Autumn and dark nights and coal fires and... Hallowe'en!! I love it!! So now we have a week off with some really nice things planned and are very much hoping Elin maintains the mood she was in today - that will make a very nice half term indeed :-)
Happy holidays everyone


Sunday, 18 October 2015

Holding our breath..

Sorry lovely readers! Yes, it's been a while since I updated again, apologies! I was busy trying to wipe the egg off my face after boldly stating in my last post that things for Elin were better than they'd been in ages! You knew it, I knew it. I spoke the words that should never be spoken. I tempted fate and fate gave me a kicking.
Actually, Elin hasn't been all that bad. But we did end up having to stay in hospital overnight for the first time in a loooooong time. Basically, the Autumnal bug got her! A cold and cough can just floor her. She couldn't keep her SATS up, so into hospital she trotted for some O2. This happened to coincide with a visit from my lovely Scottish friend Nicola, my Edinburgh University flatmate of three years and the first person I laid eyes on after my Mum and Dad left me unpacking boxes and wondering when the first freshers party would be  in my halls of residence back in 1999. I've mentioned Nicola before on the blog, because she ran a 5K not too long ago for Elin, the proceeds of which we donated to Alder Hey's Ronald MacDonald House (parents accommodation) in Elin's name. Anyway, my point is, Nicola is really lovely friend and I love her to bits.  We don't get to see too much of each other anymore so annual visits are sometimes months in the making. So it was a real shame that she spent the majority of her visit to us on the Children's Ward :-( But, such is life with Elin and she was gracious enough to say it didn't matter a bit. Who knew back on that day in 1999 as I contemplated how I was going to feed myself for the next three years, was that what Drama school would give me was not a lifelong career in Acting, but a close knit family of lifelong friends. Perhaps, in the University of life, that in itself is more important. Anyway, Im a lucky girl and Elin is too.
Last weekend in pictures:

Elin was very sleepy and needed two days off school at the end of the week. We hoped it would pass! She was glad Daddy Drake was off work recovering from an operation so he could give her extra cuddles.

Oh dear! The inevitable! It didn't pass, O2 was needed. Paul stayed in hospital with Elin overnight which was very hard for me as I am a total control freak when it comes to Elin and it's always me that states over! But we didn't think it would be fair to ask Nicola to sleep on a hospital floor as part of her weekend break, so I had to give in :-) Turns out they were fine, Elin enjoyed having Daddy there and Paul got in a few hours reading his book  throughout the night, not being one for being able to sleep in strange places (I don't have that problem) 

Nicola enjoying her visit to Wales!! (Doh) Yes, I know she looks about 15 but she is actually older than me (bah). I don't know what her secret is, I think it's Scottish air and the fact she only see's the sun about twice a year up there. Also maybe Iron Bru is the answer??

We are going home!!! My beautiful girl breaks out one of these smiles and its like nothing has happened.....

So the story of last weekend finishes with another two days off school, before finally going back on Wednesday where by and large she's been absolutely fine, despite still being a bit bunged up/coughy. I'll try not to speak the unspeakable words again anytime soon and just hope that for a good while that's any poorly-ness out of the way.
I have more to blog about but my bed is calling so I will try not to leave it so long until the next Elin update. Thanks for reading!
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