Living with Cerebral Palsy 🍋🍋

Saturday, 17 February 2018

Half Term

Hurray for half term and lazy mornings! Elin has had a lovely week, she even managed to do some super sitting in her chair (and some not-so super sitting too of course!) so we're really proud of her.  The week kicked off very nicely with a visit from Caitlin who was home from Drama School in London to celebrate her 20th birthday.  Of course, Elin was absolutely delighted and had an added treat of actually having Caitlin putting her to bed, which she loved. I felt really sad when I realised that Caitlin wouldn't be there when she opened her eyes again in the morning, Elin just adores her so much it's hard to contemplate what her little mind is thinking when Caitlin is not around. I know that Elin very much lives in the moment and so I try to remember that but still, seeing them together and knowing they have to be split up again tends to make me a bit emotional! I sometimes worry that Elin is a bit lonely on the weekend or in school holidays with only Paul and I to play with.

This is what Paul came back with from the kitchen when I told him we needed a candle for Caitlin's cake!!!!!
Elin so enjoys company and especially being around children- which we saw yet more evidence of visiting our family in Yorkshire again this half term. At the start of the week we spent a lovely (but snowy!) couple of days with Elin's nephew, Gruff,  who you might remember from past posts :-)   Gruff is the son of Elin's big brother, Gareth, and his gorgeous wife Marianne. Gruff and Elin are pretty good buddies :-) Anyway this visit, Gruff was especially loving and Elin was especially happy about it. Gruff did not leave her side, whether he was 'brumming' his cars over her face, playing peek-a-boo with her, or basically just cuddling her to death. It was GORGEOUS!!

Gruff just playing  bit of body percussion on Elin!!

Big cuddles

When we returned from Yorkshire we decided a rainy Wednesday would be a good day to take Elin to the pictures. She hasn't been for ages and with here dystonia playing up a bit lately we weren't sure if she would enjoy it. Wow we were so wrong! She loved it and for the first time EVER she sat in her chair through the entirety of the film! We saw "The Greatest Showman" hoping that a musical would keep her entertained and it really did- I don't think we've ever seen her laugh so much in the Cinema!! She absolutely loved it.
Elin then had an important appointment on Thursday at the Movement Centre in Gobowen. This was an appointment following on from the one I blogged about at Christmas, to be fitted for a new standing frame which she will use for 30 minutes a day at home to do focused head control training. The frame fitted like a glove and Elin looked very straight in it which was lovely. However, we are having massive issues with Elin's feet at the moment. The tendons in her ankles are very tight and it's been increasingly difficult to get Elin's feet anywhere near flat. Her current splints and boots accommodate this curvature but do nothing to correct it. This means because she is so vertical in this particular frame the feet end up resting in a very bad position and the splints put too much pressure on her skin and cause pain and markings. She's basically standing on her toes :-(Staff at the Centre are going to work hard with physio's and the Orthotist at Wrexham to see if we can get some more corrective splints cast just for wearing in the frame, to encourage her foot to be more flat and in a better position. It was a shame we can't start the therapy in the frame straight away but we were all agreed the benefits would be minimal unless her position and comfort are paramount. 

 Elin also managed to visit her Great-Grandad and Great Nanny this week but I stupidly didn't get any photographs! Finally Elin has just been rounding off her busy half term chilling out in her room. We've seen some more good sitting in her house chair (and again, some not so good!) she has managed over an hour at least twice this holiday! Wow!
We even managed to find some time to paint Elin's nails an awesome sunshine yellow colour!! Better make sure we remove it before Monday, even though it does actually match her school uniform. Strike a pose, Elin! 
So, it's been a lovely holiday (even though I seem to have acquired a nasty bug- fingers very firmly crossed that Elin doesn't get it!) but I think Elin will be glad to go back to school on Monday for lots of fun with her friends. 
Just including this picture because of this amazing dress!! It was a Christmas present, what a lucky girl!!

Hope you all have a good week folks. Until next time.


Friday, 9 February 2018

Elin's Diary #7

Just look at this little beauty all snuggly in her winter Aran jumper! Lately I have been catching myself staring in complete shock at how big Elin is getting. It makes me feel so proud that she is so well, healthy and happy as she slowly approaches her 10th birthday. It also makes me panic. I'm not ready for her to be bigger, or older. I worry about what this means for her. I know she has years and years left of schooling before we have to think about what happens when she is no longer in full time education. But the last 10 years suddenly appear to have passed in the blink of an eye. Caitlin was 20 yesterday (coming home for snuggles with Elin this weekend) and believe me it feels like she was 10 about a week ago!!  Paul is great at not thinking about things until we absolutely have to, but I am a bit more of a worrier. I also hate change, so it's difficult to think about Elin growing up from a child into a teenager without having an element of fear underpinning my pride in the amazing person she has become. I guess I also have to think about just how far she has come in those 10 years too, though. The difference in her now to when she was a baby is incredible. She has developed and improved in ways we never thought imaginable. So from that angle, the next 10 years are also potentially very exciting. That's what I have to remember when I feel scared. 
As well as looking forward this week I've also been looking back a bit! This is a photo of Elin with Alfie. Alfie is the son of one of my oldest friends and one of my four fab flatmates from Drama College in Edinburgh. Laura and I hit it off right away when we met back in 1999, both of us hundreds of miles from home and sharing a black sense of humour, a love of cheap fizzy wine and an obsession with the Spice Girls (I know, I know, don't judge me it was the 90's!). Anyway Laura was able to visit last week from Stratford where she and Alfie are living with Alfie's brilliant Daddy who is currently performing with the RSC, a bit closer to us than their permanent base in London, so we could finally introduce Elin and Alfie, which was just lovely. It's so weird when one minute you're holding each other's hair over the toilet bowl after an over indulgent student house party and the next minute you're children are getting to know each other!! Elin is one lucky girl to have so many people who care about her in her life. 
In terms of actual activity this week Elin hasn't been up to much outside of school, what with the weather deciding to be apocalyptic again. She took her traditional Valentines balloon into school for her little boyfriend Llew and enjoyed making a snappy green crocodile baguette! She's also been enjoying some painting and listening to sensory stories. The above picture was taken today at her weekly horse-riding session at the Clwyd special Riding Centre. Paul and I were super impressed today as she had been pretty dystonic in the car on the way, so we wondered how much benefit she would get from today's session. But as soon as she was on the mechanical horse she totally relaxed and settled into it's rhythm once again which was so lovely to see. Today the physio worked on getting Elin's hands into a nice relaxed position and we were thrilled to see how well she did! Her hands stayed like this for the duration of the session, so good progress was made again. 
Well today marks half term for us! We are looking forward to seeing Caitlin tomorrow when she pops back home from London for her birthday and then we are going to visit family in Yorkshire for a couple of days. After that, Elin has a couple of appointments (one important one at the Movement Centre!) so I know I'll have a lot to update with next time. Until then, thanks for reading and have a great week! 

Ruth xxx
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