Ice Age

Elin showing how alert she can be when she is on top form! Not only has she been sitting (yes, sitting in a chair!!) for ages but she is clearly enjoying the Ice Age DVD, clearly listening and reacting. Amazing girl! This makes me so happy! A very simple pleasure for most kids but requiring utmost concentration and cleverness for Elin.  (Sorry for sideways view of video)

Mini break

Elin has really enjoyed her holiday in London visiting family! She had some wonderful presents and was mercifully well in herself whilst we were there. It was great to get a little post-Christmas break. Driving down in the evening works really well, as she is able to sleep during the journey and we were really glad to have use of the Drakemobile and it's gigantic boot! We have to take so much stuff for Elin it's unreal- plus loads of presents of course :-) Given that it was quite a flying visit and Elin's issues with sitting in her chair, she didn't partake in any sightseeing but instead enjoyed lots of cuddles and attention from our wonderful extended family. We just wish we could see more of them- why does London have to be so far away???

Merry Christmas

So Elin woke up on Christmas morning, wearing her new 'One Direction' jammies (she loves Harry the best) to discover Santa had completely ignored her this year as she is so naughty!! Haha not really she was spoiled ROTTEN. I have never seen so many beautiful presents, we are so grateful for the thoughtful gifts and love shown to her by all our friends and family (sensory story maker- you know who you are- AMAZING!! So gorgeous it made me cry). We had a lovely day and Elin was fine, although she had given us a scare the day before when we ended up on Children's Ward. She had a nasty seizure which didn't cease with the usual medication. We were supposed to be at the traditional annual village crib service at Church (it's the only time we go and it makes me feel really 'Christmassy') and instead had a bit of a mad dash to hospital. Not ideal on Christmas Eve!! The doctor wanted to keep us in for observation but I point blank refused on the basis that we are ten minutes from the hospital and we would be observing her VERY closely ourselves at home (and, mr doctor, do you not realise it CHRISTMAS EVE???) Anyway he conceded and Elin was home in time to leave a mince pie and a carrot out and get to bed on time. She was kind of woozy on Christmas day in the end from all the medication the day before, which was kind of disappointing. However we were just glad we had no more hospital visits and my heart went out to all the kids and parents on Children's Ward that day who wouldn't be escaping like us. Elins next adventure is a trip to London today to stay with family- she seems much brighter today so fingers crossed for no more drama. We know how Elin loves a drama!! A very merry Christmas to all blog fans and thank you for caring enough about our wonderful girl to keep reading.xxx

The loveliest little sheep in Bethlehem...

Possibly one of the best photo's this year!! Today marked Elin's third Christingle service at the Church by her school and it was wonderful to see her looking so unbelievably cute!! I think I might have to buy her a sheep outfit now to cuddle her in at home! Thanks to her amazing support worker too for managing to get a few big grins from her, it really made it for us.
Elin's SEN School's Christingle service is about as cute as they come.  The children and parents gathered today for carols and the re-telling of the Nativity. You would have to be made of stone not to shed a tear, as the children arrive down the aisle of the Church, looking gorgeous in their costumes and looking so happy. There is such a sense of celebration amongst the audience, of sharing in the joy and pride that these individual children bring to their families and to their school, and of course the fact that it is only a few days before  Christmas compounds everything. When the candles are lit and the Church lights turned out for 'Silent Night' there is certainly a magical atmosphere, whatever your beliefs, if any. Because ultimately every single person in the Church today, whether they be Parent, Teacher, Nurse, Carer etc could not fail to acknowledge the common faith we were all sharing. Faith in these kids who amaze us all daily. It's the most rewarding kind of faith there is.

At Last

https://www.facebook.com/photo.php?v=10151516670506854&l=7894423840378964700

This is a link to one of Elin's favourite sounds.....her big sister singing! Caitlin created this track in our spare room with nothing but a backing track and a laptop! She is still only 15 and we think she is pretty amazing ;-)

Our guiding star.....

This week was Elin's school Christmas concert. I didn't know what she was going to be, last year she was a fluffy penguin which is kind of hard to beat! I wasn't disappointed this year. In a shining example of art imitating life, she was, of course..a star. Complete with twinkling fairy lights on her costume. Could it have been any more appropriate? Actually it could, because she wasn't just a star, she was THE star..the guiding star. Quite an important job, that. Metaphorically bang-on too, since she is truly the little guiding star in our lives. She looked beautiful and really enjoyed her moment in the spotlight, smiling and playing her bells happily- with a little help ;-) Seeing her up there I didn't even cry (I thought I would) because I was just too happy and feeling very blessed to have the opportunity to be there among the other parents. It's not something I ever take for granted. I was hugely moved though, especially seeing the little classmates of Elin's achieve their moment in the spotlight too and do so well. There was tangible support from every person in the room for these kids (the concert is a mainstream school concert but includes the children from the unit where Elin and her classmates are) and it felt truly special. When Elin was carried onto stage looking unbelievably adorable, the audience all went 'awwwww!' and though I cannot feel proud of lines learned or spoken or dances practised and performed, right then and there there wasn't a prouder Mummy in the room. So, so proud of my little star. My beautiful, twinkly guiding star.

A Christmas Poem by me

The Mummy's rush around
They don't know where to start
Christmas time is coming
They haven't got the heart

The kids are too excited
The presents cost a lot
I know it is a headache
But please look at what you've got

My child does not know Santa
She cannot write a list
Christmas can remind us
Of all the things she's missed

But as we preach peace and joy
and are decking every hall
Perhaps it is our baby girl
who is the most 'Christmassy' of all

For if baby Jesus saved the world
Then died to wipe out sin
No greater miracle can be found
Than our Christmas angel,  Elin.


xxxxxx

Baby Dot is feeling better

Elin is feeling A LOT better today and at the risk of tempting fate seems back to her usual self. I know some of you Elin fans will be wondering ;-) Fingers crossed it continues and she can be back at school right as rain on Monday and ready for the Christmas Concert on Tuesday (please god!) xx

Throw back Friday....

One of my favourite's of Elin, Taken in 2009 aged 14 months. Doing a little better today, calmer and less dystonic. Hoping for a good weekend!

A day of two halves

Good news and bad in Elin's little world this week. Let's start with the good- her Orthopedic appointment in Alder Hey today went really well. Her hip joints are the same as they were two years ago when they were last x rayed and looking good (children like Elin can be at risk of their hips coming out of their sockets or becoming 'shallow' as they don't rotate, basically because there is no walking and so as the child grows they can simply put, just 'pop' out over time) there is no reason for any surgery or to even be thinking about it. Also, despite Elin's feet gradually becoming quite bent the surgeon was happy that, with the right pair of splints (which we are picking up next week) which will enable her to stand in her frame despite her feet no longer bending at right angles, there is no reason to intervene. When we asked about botox injections for her ankles to maybe help her feet bend into a more natural shape he pointed out that the benefits would only be short term and that's with serial casting too (which would be a logistical nightmare not to mention horrible for Elin) they would still eventually go back into their current position. He said he was against doing any potentially painful intervention that wasn't particularly necessary. We agreed. Crucially, he pointed out he had seen many cases where intervention and especially surgery could set off or even cause terrible dystonia , so knowing that Elin already has a diagnosis of this made him really wary of doing anything. I think we were both quite relived that she won't be going through any potentially painful procedures anytime soon and the surgeon was so helpful and understanding, really taking time to explain things and chat- it was one of those great appointments where you really feel it was worth going, not just a rushed ten minutes being ticked off a list. So now for the bad news. Sadly it seems the dystonia is back and she is not herself at all. Dystonia is a condition she was diagnosed with last January, it's a movement disorder affecting all of her muscles, fairly common in brain injured children and adults but also affecting perfectly healthy kids sometimes, too. It basically makes her muscles shake and tense-up, contorting her body beyond her control and  giving the illusion of a seizure or fit. (Pretty confusing when she also has epilepsy and her epileptic seizures look exactly the same.) Anyway, that's dystonia in a nutshell for those of you who don't know, and she has it all the time, it's just sometimes is very well controlled and sometimes it isn't controlled at all (the worst time of which saw us admitted to Alder Hey, terrified, last January). Since this year has been mostly in the 'well controlled' bracket it's been upsetting to see it return this week in such a continual loop (usually you will get the odd five minutes or so of it, then it will go again) resulting in her needing rescue medication twice since it started on Tuesday just to halt the movement. This morning was better for her and her movements became a lot more 'normal' but then came a visit to Alder Hey for her Orthopedic appointment in pretty horrendous weather conditions and coupled with a car seat it was all the ingredients needed for the dystonia to rear it's ugly head again. Half way through our appointment she needed rescue meds after several attempts by us to stave it off with cuddles, changes of position etc, and the buggy was a glorified shopping trolley to carry our bags- we couldn't even bend her to sit her in it let alone fasten any straps. I won't even go into how awful the journey home was with her in this state. So that's where we're up to and I'm just hoping tomorrow is another day and will bring better news for our girl. It was ironic in Alder Hey for me, self confessed christmas-aholic, that the beautiful Christmas tree's and lights and displays in the waiting room and corridors twinkled and reflected in Elin's big, startled brown eyes, almost mocking me as I held her this way and that, trying to help her relax, as if the Dystonia had turned up with claws and bad breath like the Grinch that stole my Christmas spirit. Dystonia. Bah. Humbug.