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

It's ok not to be ready..

On this parenting journey through Quadriplegic Cerebral Palsy, there are  a lot of things we have to face that we're not ready to. This started of course at Elin's birth with accepting the diagnosis, which we didn't want to.  It continued through accepting tube feeding as a permanent,  a kitchen full of medication and a spare room full of equipment. Accepting a different community, a different set of priorities. Accepting a set of four wheels where her Clarks 'First Steps' should have been. More recently accepting a hoist just to get her into a bath. Accepting that dystonia will regularly render us housebound. We've had to accept a future we really weren't willing to approach and lets face it, a different life entirely. We had no control over any of these things- for a committed control freak that's pretty hard going!!
But, there are one or two things we have been able to delay facing. Leaving our beautiful little cottage for one (we successfully argued the case against the council to have adaptions done here, buying us a few crucial more years). Sending Elin to respite (respite facilities near here are AMAZING but thanks to help from family this is something we've not yet had to consider in terms of her care) and moving her into her own room. Yep, that's right, Elin hasn't really slept in her own room for the past nine years. I have no strange earth-Mum organic childhood development philosophy about this, I'm far from a co-sleeping parent advocate,  in general terms I'm far more practical than I am molly-coddler (when I was pregnant I had grand plans of the baby being in their own room by six months at the latest and Elin's Daddy agreed), I love my sleep and my privacy. Yet somehow, here we were. Nine long years and no movement.
Believe me I know how ridiculous this sounds and in truth I'm a bit (quite a lot actually) embarrassed about it. If you're a friend or a member of my family THANK YOU for biting your tongue on this as you undoubtedly have done. I wasn't ready to hear whatever you might have said before this year. If you're a professional involved in Elins life and you're reading this, Im sorry!! I lied because I couldn't bare to admit that we had a downstairs room kitted out for her with a hoist, moveable bed etc and we were still carrying her upstairs to sleep in our room every night. But I wasn't ready and I'm not sorry for that part. Everything else in Elin's life has had to happen whether I like it or not from day one. Decisions about her health, future and provision are rarely my own as her Mum. This was my decision and for a long time I was happy with it.
I am up often several times a night. Elin regularly chokes in her sleep. She often needs middle of the night nappy changes due to being pump fed overnight and the sheer amount of liquid she is taking in. She almost always needs medicating halfway throughout the night too, since her brain doesn't naturally produce the sleep-aid Melatonin. I just didn't see the point in racing up and down stairs all through the night to do all this. Especially when I was teaching as well as being Elin's Mummy. I was just too exhausted to want to think about it. Then my friends son who also had Quad C.P passed away in his sleep and through our heartbreak we became even more jittery. I think it would have been weird if we hadn't. So just like that, twelve months turned into two years, then four, then six and suddenly we had a nine year old sleeping in our bedroom and I was unable to carry her downstairs in the morning anymore, relying on Paul do do the lifting.
Around this time I stopped being unable to face the prospect of Elin sleeping downstairs and us sleeping upstairs. I started to wonder if it was time, the set up seemed vaguely ridiculous. She had done so much growing between he ages of 8-9. Not only that but her health has been so brilliant, no seizures or hospital admissions for almost two years. Her 9th birthday really helped me focus on all of this. She's just growing up.  I ordered a video monitor system (fantastic- 'Hello baby' from Amazon) and took a deep breath.
Last night was the first night we put 'operation big-girl sleeps' into motion. It went brilliantly. Elin only got me up once. I'm not naive enough to think that this will be the case every night and I'll probably curse my decision one night in the not too distant future on my sixth descent down the stairs, but the fact is I felt ready. We both finally felt ready as parents and I think Elin is too (it's only the past two or three moths that she's stopped choking in the night for example, something we couldn't have coped with if she was out of our sight I don't think).
I'm not writing this post to justify the past nine years, because I don't think I need to-at the end of the day that's just how it had to be for us and its surprising what you get used to. I'm writing this post because I want to share its ok not to be ready sometimes.
That goes for all aspects of Motherhood I think though, special needs or not. It comes back to trusting your gut, not pressurising yourself into things that aren't right for you and not caring what everyone else thinks (ahhhh! the true holy grail of parenthood right there!!)
Paul and I did feel a little weird this morning, this definitely marks a new era for us and we can't deny that Elin is growing up in her own special little Elin way. But mostly we felt pretty happy and totally confident that we couldn't put off this change any longer. It felt right, so it was.
And I think that's probably a pretty good rule of thumb for most of my parenting decisions, which I shall remind myself about next time I'm beating myself up over some small decision or other. Honestly I will, I promise :-)

P.s Thanks for the messages about the blog (or lack thereof). I've lost my blogging mojo a bit lately (and also my wifi connection which doesn't help but that's another story) I hope my 'Bitesize blogs' on Instagram have made up a little for this and enabled you to follow Elin's Summer adventures (link on right hand sidebar)

xxxxxx