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.

xxxxxx