Elin's Diary #3

Newsflash! Christmas has come early at the cottage! For the first time in living memory Elin and I have managed to persuade Paul to allow the tree to go up before mid-December. Even Ebeneezer Drake himself was powerless to resist the charms of 'trimming up' to a Christmas song soundtrack as a snow blizzard raged outside. You'd have had to have been made of stone not to feel just a little Christmassy, so the tree is up, the lights are on, we've watched 'Elf' (note the matching T-Shirts- we're big 'Elf' fans here) and Elin is LOVING IT!! Oh- a point about our tree. It's not the most aesthetically pleasing I know. I would love to have a real one covered in only white berry lights and glass baubles. I realise ours looks like one of Santa's Reindeer's just vomited a load of Christmas decorations all over it.  But Paul has years worth of Christmas decorations that belonged to Elin's big brothers and sisters and they all have a story and HAVE to go on the tree. My own family adopted the tradition of buying Elin a new decoration each year and over the years I've had precious decs as gifts, too. So I have to concede it makes sense to have a tree of memories instead of a tree worthy of a Christmas advert, its not the most beautiful but you can definitely find something new each time you look at it! Anyway Elin approves :-)

Following the excitement of putting up the tree on Friday though, came a not-so-exciting Orthotics appointment. Luckily the Orthotist was visiting us at home and give him his due he battled through the snow storm to get here. I struggle with anything to do with Elin's feet. It just upsets me that they are so bent :-( Some of this stuff never gets any easier. It's a total catch 22 because the more you try to correct them, the more it hurts Elin and there is trauma to her skin on her feet and ankles. But if you don't try to correct them at all, then standing in her frame could start to become very uncomfortable for her and may even start to get impossible, as she continues to weight bear on the outside of her feet instead of the soles of her feet. Standing is so good for her that we want to avoid stopping her standing in the future. At the moment her AFO's and specialist shoes aren't really doing their job when she is in her frame. Hence the specialist Orthotist visit. He was very reassuring. NOT!!!! "Her feet are absolutely terrible aren't they!! Why have they been allowed to get like this?" etc etc until I wanted to cry or fling a few baubles off the tree at him before asking him if he was aware it once took us over 12 months to get one pair of boots via the NHS and even then they still don't fit (I'm not knocking the NHS, it's just an overstretched service in an horrendous period in history for anyone with any kind of specialist needs I realise, but it makes sorting these issues out nigh on impossible whilst all the time they get worse) . Anyway the point is, Mr Straight-Talk has a plan for a special pair of boots she will wear whilst in her standing frame that should help a lot with this issue given the fact that we really don't want to consider surgery. So we will forgive him his bedside manner and hope he can deliver what he promised. 

Another, rather more successful appointment this week was Elin's assessment at 'The movement Centre' in Gobowen Hospital. Anybody wanting to take a look, the link is here https://www.the-movement-centre.co.uk. We're not sure how Elin got to nine years old without us hearing about this place but anyway a visit is better late than never I guess! The centre aims to develop movement for disabled children in different ways depending on need/ability (in Elin's case it will be by trying to improve head control and core strength) . She went on Thursday for an extremely long assessment and it's fair to say we were both soooo proud of her. She tolerated all the manipulation/moving/positioning brilliantly by people she had never met before. She really was a superstar, especially since the whole thing had to be done sans clothing too!! Brrrrr!!!!!

The director at the centre decided that it was worth trying a programme with Elin for the next 12 months. This physio programme will run alongside all Elin's other physio programmes and will not interfere with any other work being done. She was measured for a specialist standing frame which we will keep at home which will support her from the chest downwards and gradually remove a head rest  allowing her to practise side-to-side head movement and trying to encourage her to keep her head up. We are not expecting miracles and neither are the centre but we think that it's worth a try. They will set a programme we carry out at home and then re-visit them every so often to measure progress. Should be interesting! I think Elin is certainly in a more settled place now than she's ever been to tolerate extra physio work. We'll see. The movement centre was a lovely place and the staff were amazing with Elin. We felt immediately comfortable there and she even met Santa and had a toy! This is another place largely funded by charity and run with the help of many volunteers. Once again I was left feeling incredibly grateful at the generosity of strangers and incredibly lucky to live in a country where this kind of intervention and support is available to Elin and families like ours.

So finally Elin has rounded off another great week with lots of fun in the snow!! It really has been a lovely weekend. I can't remember the last time we had snow in December but I don't think there's anything nicer than snuggling by the coal fire as the snow falls down outside! We even managed to get a little ride in the sledge today- hurrah!! 

That was Paul's cardio workout done for a week!! 

 I think we need to look into getting a specialist sledge, apparently available for £358 https://www.amazon.co.uk/Cerebra-Sledge-Ideal-Disabled-Child/dp/B00B4WZ66Q Hmmmm!!! (Paul has already uttered the immortal words 'I think I could build one of those!!!!' Oh god)

This one did the job for today though. 

Have a wonderful, cosy, Christmassy, snuggly, happy week folks!! I'll report back next week on Elin's further adventures.

Thank you for taking an interest in our girl :-)

Ruth xxx