Happy Hallowe'en

Well Hallowee'en has scarily returned the monster dystonia to our door. Shouldn't be surprised really, it has been a week since we saw it's ugly face! This crazy good week/bad week cycle may be set to continue for a while longer, then (can it just be coincidence, or something else?? Right now it seems completely stuck on a cycle, but why or how we just have no idea. It makes no logical sense. More questions for the Alder Hey doc in December methinks). Despite a renewed inability to sit in her chair, we did manage to get a little trick or treating in today! Well, sort of trick or treating- we went to the village and visited our friends in the Chemist, Hairdressers and then we went to Nanny's house for a lollipop.

Have a good weekend blog fans, may your Hallowe'en be monster free (and  full of lollipops too)

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Down by the river...

The good spell continues for Elin- yay! In contrast to the crazily warm temperatures of yesterday, we awoke to a decidedly crisp Autumn day today. We didn't mind, because Elin looks so cute in a hat (see exhibit B). We went for a traditional family outing to Llangollen and Elin had a great time listening to the river and feeling the wind on her cheeks ;-)

 Exhibit B. Cute.

Baby Gruff is going back home to Brighton tomorrow, Elin is going to miss him lots. She liked feeling his little fluffy egg head tickling her face when they have snuggles, but mostly she will miss him crying which she finds hilarious. Until next time Gruff, hwyl fawr rydan'in dy garu di :-)

                                     

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Croeso Y Cymru

Drake towers has a little house guest this week. His name is Gruff (for you English folks, it's pronounced 'Griff' lol). He would like to say hello to you blog fans:

Gruff Paul Georges Drake is 12 weeks old today and the latest addition to the family. Living in Brighton, this is Gruffy's first visit to Wales, so it's a big deal. Elin thinks he is pretty awesome:

On the subject of Miss Drake, the proverbial corner has definitely been turned for half-term. She's been amazing. Back to long walks in the buggy and trips out. Today she took Gruff to visit a bona-fide Welsh Castle!! We have been so lucky, given what a bad place she was in just last week, dystonia-wise. Fortune must be smiling on us!! Thank you, fortune. Hopefully more half-term adventures to follow, but in the meantime here are some pics of our day xx xxx

Oh-and on the way home Elin decided to call in and see her Great-Nan and Great-Grandad. They were both pretty chuffed to see her so happy! Couldn't resist sharing this video of her responding so brilliantly to my Grandad's old favourite 'Round And Round The Garden'. Please excuse his comb-over but he is 83 after all and we interrupted him having forty winks ;-).

Have a good night, people!

xxxxxx

An impossible position

This is utterly heartbreaking, whatever your views it certainly raises some important questions on the 'Right To Die' debate.  These parents are very brave for opening themselves up to potential criticism by wanting to get the issue into the public domain via the media. Hopefully it will stimulate important and necessary debate amongst the 'powers that be'. I don't think it's a position anyone can judge until they are in it themselves. I cannot imagine what it would be like for us to watch Elin in constant pain, it would be something I don't think any parent could deal with for more than a day or two let alone a lifetime. God bless you Nancy and your family, going through something no family should ever have to :-(

http://www.mirror.co.uk/news/real-life-stories/begged-judge-end-sick-daughters-4509235

Lovely laughter

Elin finding her splint velcro hilarious!! Yes, she's in the same dress as yesterday don't judge us!! 

xxx

Thanksgiving

Happy half-term! Or at least we are hoping it will be! I do love Autumn half-term, this time of year being my favourite :-) Elin continued to have a pretty bad week- one of her worst in terms of the Dystonia. However yesterday brought some signs of improvements and today she is better again. As today was a teacher training day and I was on a course Elin spent some time with her old faithful friend Heather and her three little boys. Blog fans will know Heather was Elin's childminder until she went to school and she is basically amazing. We owe her so much. Anyway Elin got up to plenty at Aunty Heather's -including some Pumpkin carving for which she sat in her buggy for a full 15 minutes-and did a lot of smiling and even some laughing. Given that we haven't really seen 'our Elin' for a good week this was great news and of course I am hoping it means she has, once again, turned that elusive corner. It would be marvellous timing if she has. Fingers crossed.
On a different note, in Heather's absence in Elin's daily life now she is at school full time,  she has been lucky enough to acquire another 'Guardian Angel' to be with her when we are not there. Several actually. They are not friends or family, or even people we would ever have known if things had been different. They are the staff at Elin's school. Not in any way obliged to go the extra mile and dedicate every day to her wellbeing with unwavering focus, but doing so just the same. Because. Not because it is a job, or just because they are paid to do it. Because they want to. Because they love to, and they love her and all the other amazing children in their care.
This photo I took this afternoon is for you.
You deal with Elin's Dystonia brilliantly- not to mention everything else- and I simply could not leave her each day with anyone else.  I had a dream last night which kind of prompted me to write this. I was watching David Attenborough before bed and right at the end there was a Leopard stalking around. In my dream, this great beast of a Leopard was in Elin's school and nobody knew where he would go next. I somehow was there warning everyone and I shouted to Elin's key worker that the Leopard might come for Elin. (How crazy lol). She picked her up, turned around and began to move shouting to me over her shoulder 'No he won't, not while I'm here' and I swear in this crazy screwed up, funny dream I had utter faith that the Leopard had no chance of getting Elin-because she was with you.
Happy half term to all you wonderful workers and especially you, Elin's key worker, who deserves her own blog post really but wouldn't want it because praise and thanks are not why she loves her job. You all help to give Elin a better quality of life than we could have wished for (it doesn't take a degree in psychology to work out what my dream meant!) Have the break you deserve and I hope this photo goes some way to starting off your holidays on a positive:

Thank You.

All our love, Mummy and Daddy Drake xxxx

Elin falling asleep

Not been a good weekend for baby Drake. Lots of Dystonia and wide-eyes :-( Unable to sit or tolerate any demands at all, she has been cuddled all weekend and passed between the two of us continually like a hot potato.  However for the past two nights she has enjoyed listening to Daddy's guitar whilst she falls to sleep, the Dystonia finally releasing her from it's grip and into the land of nod instead, and I got it on video tonight (and managed not to sing and spoil it this time!). So sweet. We're keeping our fingers crossed for improvements this week. I'll keep you posted ;-)

xxx