Sorry I haven't updated sooner! I couldn't until I had good news, which is why it's taken this long! Elin smiled today for the first time since Christmas Eve. We've had a pretty tricky few days involving antibiotic induced bottom explosions (oh, how I love to strip a bed and an Elin twice a night for almost a week!), coughing fits, worryingly shallow breathing, impetigo, lots of snot and saliva and not a lot of sleep for anyone at Drake Towers. Poor, poor Elin. It's been pretty heartbreaking to see her so exhausted and poorly and making little sounds like a newborn seal pup. Christmas has kind of passed us by in a bit of a sleep deprived, snotty blur. I usually love to share my Christmas day pics on my blog but Elin was so poorly we barely got any I can use- she just looks too sad! I have included these though- just for the record!
Soooo many presents and these weren't even all of them! Thank you so much to those of you reading this who contributed to her huge Christmas swag- she had some beautiful, amazing gifts. You know who you are!
New Christmas Day dress on but not feeling the vibe :-(
Into festively personalised P.J's and off for a nap by dinner time. How sad :-(
As you can see she wasn't herself at all, and it got worse hence our trip to hospital on Boxing Day (see previous post). Thankfully, she has seemed to 'pull an Elin' and has bravely rallied herself just in time for New Year by the looks of it!
The next photo was taken today and pretty much the first smile we have seen since Christmas Eve. We have had family up visiting from London so Elin's little pals Arthur and Tabitha were on hand to amuse her and coax out one of those famous grins! Sadly, they were actually leaving today and so Elin missed most of their visit in a sleepy haze :-( In summary, Drake Christmas has been something of a write-off but as usual we are staying positive and hoping a healthier and happier start to the New Year is a sign that 2015 will be the best year yet for our girl. Happy New Year folks, have a great time tomorrow night wherever you are and whatever you're doing. Keep smiling!
Isn't it funny how everyone likes everything to be perfect at Christmas? A lot of families seem to be feeling under pressure to get everything perfect. The food needs to be perfect, presents have to be right, the kids need not to fight and argue just for one day etc etc lest there should be that most damning of declarations "Christmas is RUINED!!" Well, it goes without saying that Christmas, however badly things go off course can never be ruined as long as we have Elin. Way too many of our friends along the way have come to learn the true meaning of Christmases forever more being ruined and it's them I think of each and every year. Oscar, Lauren, Harvey, Annie, Charlie, Kate....each of you deserved so many more Christmases than your short time here allowed. When I was a kid it was snow I used to wish for most, I loved it and the idea of a white christmas was too irresistible for the romantic in me to ignore. I was of course, almost ritualistically disappointed. Now, obviously, my wishes are simple and straightforward. I wish for Elin to be ok. That's all.
Last year Christmas Eve wasn't great for poor Elin, we ended up in hospital with dystonia. This year Boxing Day hasn't gone according to plan. We had to go to hospital today after a pretty bad deterioration in her cold and cough over Christmas Day rendering her struggling to breathe from coughing and unable to tolerate her feed causing lots of continual retching. She went very pale and continually growled with her sore throat. She slept most of Christmas Day and not even the opening of her presents could raise a smile! Luckily for us, our favourite doc was on duty, Elin's guardian Angel who saved her life when she was a week old in special care and provided much comfort to us back then, too. He sorted her out with some magic antibiotics and we are hoping she will be back on form very soon. However, a quick dash to hospital for antibiotics is small fry really. She's still here with us now, in front of the fire, listening to Monsters Inc and tasting some chocolate. Who knows- soon she might even give us a mega-watt smile again and we will forget all this in a heartbeat.
So thank you, Santa..for another 'perfect' Christmas- for we are all still very much together and more grateful than you can know.
Oh...and guess what.........
the kid in me is pretty grateful today, too :-)
Lots of love
xxxx
I don't know if I will get chance to update over the next couple of days although I will try and add Christmas day pics as soon as I can! Hoping our very own little Tiny Tim is going to have a good couple of days and we might get to the Crib Service in St Mary's Church on Christmas Eve this year - religious or not you can't beat a couple of Carols in a beautiful Church before traditional Turkey butties mmmm!! She's been decidedly off colour today after a very disturbed night though no real dystonia to speak of- more just a bit grumpy and sleepy and quite stiff! I think she might be missing her friends at school. She did manage some smiles today and of course I caught one on camera. She also hung her new bauble on the tree- it's a very special one I think blog fans might recognise it's main feature! Thank you Nanny! So until next time, enjoy what I believe is the best day of the year (Christmas Eve) and have a wonderful Christmas Day, too.
"And so it was always said of Scrooge, that he knew how to keep Christmas well. May that be truly said of us, and all of us! And so, as Tiny Tim would say, God bless us, every one!"
Christmas has started at chez Drake and that's official, because the tree has come down from t'attic. Not just because of that though, but because today we took Elin to see a special screening of 'The Snowman' and you don't get much more christmassy than that. 'The Snowman' was always my Mum's favourite, then by osmosis one of my favourites. Then, Elin's wonderful childminder encouraged the obsession as her little boys played it pretty much on repeat from October onwards in the years Elin was with them. Since then we have played the DVD for Elin each year and her enjoyment of the music really can't be denied, she visibly listens each time and smiles her head off. Why wouldn't she? It's beautiful. So, when I discovered that Chester Cathedral were holding a screening of it, along with a 25 piece orchestra playing the music, we just had to go and take Nanny too of course.
Elin hasn't had the most relaxed week in the world so I was a bit worried about how she would react. The Cathedral was absolutely swarming, not only because of the screening but also due to a Chronicles of Narnia exhibition (which I would also have loved to have seen!) . I have to say it wasn't particularly well organised, you had to queue all the way through the narrow stone corridors , continually bumping into people trying to get out. Not much room for passing buggy's/chairs. Then, on arrival at the box office we were told to turn around, go all the way back out and around to the side entrance of the Cathedral- as were many others. People were pushing to get in and 'Snowmen' audience members were pushing to get back out. Not good. I wondered if it would have been too much to put a small sign at the entrance telling 'Snowmen' visitors to go to the other door. Or maybe one of the countless high-vis stewards could have simply shouted it out now and then to the teeming crowds of people?? It could have been pretty easily avoided- I don't suffer disorganisation very well! If it hadn't been christmas I might have complained, but I didn't want to be a humbug.When we got to the other door we had to wait ten minutes and form another queue. Needless to say all this had taken it's toll on Elin who was now bouncing around in her chair in the grips of stress-induced dystonia. I have to admit I was worried about whether she was up for an orchestral performance in a vast, unfamiliar space.
I needn't have worried. It didn't take her long to calm down. As the orchestra started and the lighting changed she looked around, all wide eyed and wondering. So cute. The orchestra played a good 20 minutes of 'The Nutcracker Suite' prior to 'The Snowman' starting. Elin wasn't interested in this. She shot me a few 'bored' looks and wriggled around on my knee as if to say 'Oh Mum what's occurring-I thought this was the Snowman?'. I started to worry again that she wasn't going to cope with the duration of the show. Then- it started. We immediately noticed a change in Elin (not just Paul and I- Nanny noticed too so it definitely wasn't wishful thinking!). She stilled, listened intently and broke into a wide smile which progressed into extra loud guffaws. This pattern repeated several times throughout the performance-she really did laugh very loudly!! To our minds, there is no WAY she didn't recognise the score of 'The Snowman'. She absolutely did and she loved it. And that, blog fans, is where Christmas begins for us this year. If the rest of the holidays are just as delightful, we will feel very lucky indeed.
Oh- we decorated the tree too, while 'The Pogues' were on. Carlsberg don't do Christmassy Saturdays.......
Sorry again for the lack of posts recently blog fans. Time hasn't really been on my side for the past few weeks- if you think the lack of posts is bad you should see the state of my house. I'm one clean pair of pants away from having to wear bikini bottoms to work. Anyway, Elin fell back into a dystonic cycle following our visit to Alder Hey (quell surprise). We upped her Diazepam slightly and she does seem to be perking up again now. Having said that she has also had a little bug- she's been sleeping a lot which is most unusual for Elin- so that could always affect her dystonia negatively. I think she is finally improving and I'll take a slow but steady recovery if it means we could just have a couple of good weeks over Christmas! I'll keep you posted.
Today was that time of year again, Elin's school concert. Considering how poor she had been over the weekend and leading into the week, she did brilliantly. I was so proud. There was no dystonia in sight (granted she was on the knee of her best buddy key worker and not sitting in a dreaded chair) but she did take part in the whole concert and was happy to do all the actions-with a lot of help of course-she really was quite relaxed. Must be the family history, none of us Drakes being exactly shrinking violets! It's in her blood :-) I was very brave and didn't cry. Until the end, when I sobbed like I'd just been told global reserves of red wine were running out. Seriously, you'd have to have a heart of stone not to get emotional in a situation like that wouldn't you? It wasn't just Elin either. All her little school pals, each with there own issues and complex conditions made me proud too they were amazing. Shout-out to all the key workers and LSA's who go on stage with the children, supporting them and encouraging them to perform in a crowded and slightly alien environment. It's not an easy task. It's also lovely to see such inclusion, as the children join the mainstream part of the school for the show. A real reminder of what Christmas means, if ever there was one.
We have one more show to look forward to, Elin's School Christingle service on the lat day of term. I have blogged about it before but that is when our christmas truly starts. So until then I will leave you with some gorgeous pics of Elin today. She was Cowgirl by the way! I think her 'Wild West' moniker would be Dolly Drake. So Merry Christmas blog fans from Dolly and us, after all...it's the most wonderful time of the year :-) :-) :-)
Sorry for the lack of posts, it's been a bit hectic here at Drake towers lately.
Elin is back on a 'good cycle' of Dystonia, which has been highly predictable since Monday was our long-awaited appointment with the movement disorder clinic at Alder Hey. She sat beautifully in her chair in front of the Consultant, smiling, batting her eyelids and generally emitting "definitely no movement disorder to see here folks, move along" vibes. Grrr. Madam. Luckily for us the Consultant, being an expert, did not really need to see her having a bad day as he knew exactly what we were talking about. It was really reassuring to chat to an expert int he field, as dystonia is such a complex condition that there aren't many experts around, especially not locally. It affects each child completely differently too, which makes assessment and treatment obviously extremely difficult. We had answers to some questions that had been bothering us (yes, this is common in children with HIE Grade 3 brain damage. Yes, the manifestation of not being able to sit in a chair of any description is common. No, we don't know why sitting triggers dystonia. Yes, often dystonia comes in cycles and repeating patterns. No, nobody has yet worked out why. Yes, there are plenty of medications we can try, no the cannabis trial is not for dystonia. Yes, DBS can be effective in children even with secondary dystonia like Elin. Yes, dystonia can get ten times worse than this. No, we cannot be sure she is still having epileptic fits etc etc etc) and have formulated a basic treatment plan using Diazepam, a drug she is already on, to combat the 'bad weeks' by increasing it only when necessary. Quite how this is going to work yet we are unsure, it will be easy to identify times for the medication to increase but how will we know when to decrease it again? 'Playing it by ear' has become our middle name. If THAT then doesn't work, there are other medications we can try. We also talked about an intrathecal baclofen pump, which sits under the skin and slowly pumps baclofen (which she already takes through her tube 4 times a day) into her system to try and combat the spasms. Im not keen on that, my research suggests a high risk of infection which was confirmed by the Consultant, but then conversely it has also had a really positive impact on some kids. Hmmmmmmmm.
I will have to keep you updated on the courses of action and how we get on. We are praying that something works, as seeing Elin's quality of life so rapidly deteriorate for days at a time can really take it's toll not only on her of course, but on us, too. I can cope with almost anything whilst I think Elin is happy but when she isn't -well, just imagine it was your child squirming and spasming 24/7 for regular periods of time while you watched on, helpless, and you get the gist.
In the meantime I will leave you with this video, taken on the day we went to Alder Hey- like I said- what movement disorder????? Madam!! G'night folks.
Oops! Bit introspective in last Thursday's post! For introspective read 'miserable and pretentious' haha. Anyway I'm taking a tip from Elsa from 'Frozen' this week, and the song that seems to have possessed a billion children in the months since the film was released. It's possessed Elin too - she loves it- we watch the whole film every weekend and play the songs on my mobile in between. Lots of good messages in the film I think, but for now I am finding this one most appropriate ...
LET. IT. GO.
Oh- and my very own little Elsa agree's I reckon, cos who cares what anyone else can do and what we can't, or what anyone else has got and what we haven't. Cos we have got each other and actually, that's all we need.
Well it's Children In Need day, it's not even started yet and I've cried about four times today- once during school assembly which was a bit embarrassing -but we watched that saccharine Gareth Malone butchering of the Avicii track 'Wake Me Up', which would have me changing the channel faster than you could say 'sick bucket' on the radio, but on screen, coupled with super-slow mo images of Children (In Need) had me predictably weeping like a baby. Maybe Gareth Malone does know what he's doing after all, with all his celebrity singers and swelling children's choirs in the background. Damn him and his spindly be-spectacled smugness . Anyway I still prefer the other celebrity filled track of the moment- a cover of the Beach Boys 'God Only Knows' , not just because it generally doesn't make my ears bleed but because I think the message of the song is more emotive and also, of course, it reminds me of how I feel about Elin ;-)
Speaking of Lady Crawley herself, she has had a great few days! Back onto the good week of the Dystonia cycle by the looks of it! This morning, she woke us up at 6:00am- because she was lying in her bed LAUGHING. Yup, I opened my eyes this morning to the sound of peals of laughter. Once my initial fear that she had been possessed had quickly subsided (we watched 'The Exorcist' on Hallowe'en cos we thought it would be a laugh. It really, really wasn't) I realised that it was the first time this has ever happened. What an amazingly lovely way to wake up in the morning. She was rewarded with an immediate migration into our bed and cuddles galore of course. Maybe she'll do it again tomorrow?? I would like to wake up like that every day for the rest of my life. More importantly I would like Elin to wake up like that for the rest of her life. My own little Child-In-Need, my little Pudesy Bear, my everything.
God only knows what I'd be without you.
Happy weekend blog fans
Children In Need is a VERY worthy cause, if you are able to donate ;-)
Love, us xx
It's been an exhausting week again for poor Elin. As predicted her dystonia started on Hallowe'en and has continued for a full week. It's not been as bad as the week before half term but still, it's rendering her unable to do an awful lot except sit on your knee and be cuddled. Any necessary car rides are back to being traumatic and tiring for her. I'm watching intently for signs of improvement- she's due to improve now after all- if we are continuing down the good week/bad week route that is. I guess we'll see.
Something Elin did manage to do this week was attend an appointment with a 'Bobath' physiotherapist. Bobath, as I understand it, is a form of physio designed especially for those affected by Cerebral Palsy. It is widely recognised as being the best form of physio for kids like Elin and most children's physiotherapists are now schooled in it's teachings. There is a centre for Bobath down in Cardiff and I know some parents have taken their children down there for intensive treatment and been pleased with the results. Elin has been lucky enough to be exposed to this form of therapy for some time now via her fab school physio's, but still it was good to go and meet one of the 'experts' from Cardiff and to see what she did with Elin.
It was a bit of a surreal experience truth be told as we entered the familiar physio room at our local children's centre- there must've been about twenty professionals sitting around the room watching us. Elin's school physio and the Bobath therapist started work with Elin immediately and I sat awkwardly on the floor with them, hugely self conscious of not knowing what to do and wondering if there were any holes in my leggings or if the bottoms of my shoes were dirty, what with 20-odd strangers looking at them. My focus was soon pulled however by the Bobath therapist herself who was quite fascinating and spoke like Dracula. Seriously. Her accent was totally 'The Count' from the Muppets!! She didn't have a purple face and a cloak but it appealed to my immature side and amused me silently for longer than it probably should have done. On the plus side, it helped relax me no end as I tried to work out where she was from, imagining gothic and intriguing countries where she rode around on horseback at dusk providing Bobath to children in need in return for cups full of blood. Anyway, I digress. The point is, she was brilliant.
It's hard to explain what she was doing, so I took some photo's. Sufficed to say I haven't really seen Elin in one or two of these positions before so it was really interesting. I liked seeing her standing up (against a ball) as we don't see her standing up unless she's strapped into a frame, and I said as much without really thinking -which naturally produced a collective 'awwwww' from all the people around the edge of the room and made me feel immediately sad and slightly pitiful. How can I be in a position where I have never seen my daughter stand freely and I no longer even notice? But there certainly wasn't time to dwell as Dracula was bouncing Elin up and down rather vigorously on a ball then stretching her out like a medieval prisoner on the rack- which may I add, Elin was LOVING (as much as she can love anything when mid-way through a dystonic week anyway).
So here are a couple of photo's. I noticed one of the physio's was filming the whole thing and I am greatly hoping we can have a copy as Paul would love to see what happened and I know Elin's teachers and helpers at school would too. We were very lucky to get the time with such an expert and for the first time I seriously considered travelling to Cardiff at some point to be taught some techniques to use ourselves, you know, when the Dystonia calms down and we can actually travel!
Have a good weekend blog-fans thanks for caring about our girl
xxxxxx
And, finally, just because I know you blog fans can't get enough of Elin photo's.....
After school on Friday ....and a little while later...........
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)
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 :-)
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 ;-).
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 :-(
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:
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 ;-)
We are pretty exhausted here at chez Drake! Elin hasn't slept too well for the past couple of days and the dreaded Dystonia seems to be back again, wracking her body with shakes and spasms and stealing away all of her fun. I hate you stupid Dystonia!!
The week started like this with Elin's amazing run of good days continuing into a second week:
and ended like this today after a full day at school for both of us on very little sleep :-(:
Please leave my baby alone Dystonia! How amazing it has been to see her happy for the past couple of weeks and able to tolerate sitting in her buggy! Not to have to imagine her in distress on the bus all the way to school, to take her wherever we fancy going without it being an ordeal for her, for her to be able to experience even just a quarter of what all other kids take for granted, just by being able to sit in her chair. Not to have to watch her little body twisting and straining against itself whilst she tries to work out what's happening. It's not much in the scheme of things. But it's all we want in the world.
I guess you don't always get what you want. Anyway nobody ever told me the world was a fair place. But they did tell me red wine can help with almost anything and now Roy is scattering Hayley's ashes and I can't take anymore today so I'm off to have a glass of it (haha! A bottle-shaped glass!!)
Chin up. Happy Weekend folks. At least there'll be no 6:45am alarm tomorrow. Every cloud!!
This is a video we took after school today of Elin laughing..at a video on my phone..of herself laughing!! We caught the tail end of the hysterics. Nothing like a bit of self appreciation eh, Elin!
...from last week to this for our girl! It turns out the glass was definitely half-full after all. Elin has had the best week ever, and that's official as her Teacher said so in her home-school diary! My fears that her dystonia was out of control again were so far, it seems, unfounded. It goes without saying how happy this has made us. She is very much herself again and her big cheesy grin is breaking out across her face every two minutes :-) :-) Tonight she absolutely loved listening to Paul play his guitar (yes, he has rediscovered his guitar now but his repertoire still only consists of his three ukelele songs. I'm going to have to get him some sheet music or something because if I have to listen to 'Goodnight Irene' one more time the guitar may go through the window along with the Uke and don't get me started on the harmonica). Anyway, I filmed her amazing response to this which was delightful but sadly I started absent mindedly started singing half way through and you really don't want to hear that. We do love a sing a long but the Von Trapps we most definitely are not!!! Doh .
So, let's keep fingers crossed that the good mood continues this time and we break this strange one good week/one bad week cycle! I'll let you know!
*Flashback Friday Disclaimer* I've run out of ideas! So, F.B.F is temporarily suspend until further notice!! Sorry!!!
There are some friends who are alway there for you. Via phone, text, visits. I am the luckiest person alive as I have so many of those. There are some friends who live far away, and what they can do for you is limited. But they do exactly what they can, they think of you always and Elin is part of their psyche. I am doubly lucky as I also have plenty of those kinds of friends,too. Some of my closest friends are scattered all over the country, thanks to meeting them at Drama School in Edinburgh many moons ago and us going our separate ways following graduation. It means we can go twelve months without seeing each other, but when we do it's like we have never been apart.
I lived with Nicola for the full three years of Uni. She was the first person I met when I arrived in the student accommodation in Edinburgh, having just turned eighteen and never really been far from Wrexham in all honesty. My own twin sister could not have really been much further away (Cardiff) and so Nicola and my other flatmates (also on my course) it's fair to say became my surrogate sisters. We learned everything there was to know about one another. We had fun. We looked after each other. We went out together. We stayed in together and watched Ally Mc Beale and Sex And the City box sets. We got on each others nerves. We fought. We fell out. We cried. We laughed. Fast forward fifteen years and the bond that can never, really, be broken is still there. Two of us are Teachers (and Mothers!) two of us are still acting and making a bloody good living out of it. I am proud of all of us. Nicola (that first person I clapped eyes on so far away from home and one quarter of this fab and sometimes, not so fab foursome living in those slightly rank student flats all those years ago) is raising money for Alder Hey on behalf of Elin right now. Another flatmate, lovely Laura, raised over £5,000 a few years ago to equip Elin with as much sensory equipment as possible. Five of the six other girls in my 10-girl strong year group (besides my three flatmates) are in constant touch to find out how Elin is regularly, visiting when they can (It probably would have been a full flush of six others but I fell out with one equally strongly opinionated member of the year group on the subject of Maggie Thatcher. You can't win 'em all). I am one lucky, lucky girl to have such amazing people in my life. But more importantly, Elin is.
Please feel free to share this link which leads to Nicola's 'Just Giving' page. She is raising money for Ronald McDonald House (the parents accommodation) at Alder Hey, on behalf of Elin. I have so many stories about how this accommodation has helped parents of poorly children but just believe me, it's a very worthy cause.
I can never get over the kindness of people in relation to Elin, not just dear friends but complete strangers. It touches us deeply. So thank you Nicola and everyone else who has ever supported us. I will never, ever forget what you have done. :-) xxx https://www.justgiving.com/Nicola-Cully
It's not been a good week for snuffle chops. Sophie's untimely demise last week seemed to be the catalyst for some pretty sad luck. Elin's Dystonia returned and then some. It has gripped her for several days, she has needed three doses of Buccal in the space of just over 24 hours and ended up on Children's Ward again on Thursday :-( The pessimist in me thinks that the upping of Diazepam last time this happened has had limited effect and now we are dealing with the fallout of her being on a ceiling dose of a drug that is no longer therapeutic to her. The optimist in me thinks this is a blip and it will settle down again soon. It will be a few more days before we truly discover if my proverbial glass is actually half empty or half full I guess. I'll keep you posted.
In the meantime, despite the odd half-hearted smile this week (VERY few and far between) we have actually had some pretty decent smiles and laughs today- definitely a good sign and something we really needed to see. I know there are some others out there who would like to see it too, so of course I captured it on my ever present camera. Nothing has made me happier all week. i feel like she is back with us when she smiles, however momentarily.
Oh-I missed throwback Friday - as a little boy in my Junior class said this week 'my brain is far too busy'. So I've attached it onto the end of this post. It was a letter I found in my 'special box' the other day. Caitlin wrote it by way of explanation for the extra stocking by the fireplace for Father Christmas in December 2008- when Elin was 5 months old-very cute.
Have a happy weekend folks!
xxx
So, Elin has a little friend and his name is Henry. He isn't even 3 yet but he knows all about Elin. His Mummy is my colleague at work and a very special person. She has always talked to Henry about Elin, right from when he was old enough to understand anything at all really. She bought the book 'Just Because' to read to him and, when she told him he was going to Elin's birthday party this year he thought for a moment and in his two-year old wisdom proclaimed "Elin is a Princess" (just like Clemmie in the story).
Henry picked some lavender and gave it to me because he thought Elin might like to smell it recently. As if that wasn't cute enough, Henry heard about the Sophie trauma (see below) and wanted to help. He wrapped up, in a rather scholastic gift wrap (these poor children with Teachers for parents, LOL!) consisting of a sheet of A4 paper and a plastic wallet, a toy sheep. Not just any toy sheep, but his own toy sheep from when he was little, which squeaks. He figured whilst Elin was waiting for a new Sophie it might help ease her pain.Obviously, I cried for roughly fifteen minutes about this because it was just so lovely. But more than that I managed to get a video of Elin responding to said sheep (who we have called Sian) which I thought Henry might like to see. It's not been a good week for Elin (more on this later) yesterday being the worst day for her. Literally the ONLY thing that managed to get a response from her was Sian the Sheep. I kid you not. It's almost like she could sense the good karma emitting from Henry's kind gift. So now of course I will share the video and my colleague can show her little boy the effect of such a thoughtful gesture and when Henry grows into the considerate, understanding and kind young man he is surely bound to be become, we can say we are not at all surprised. Because Henry was the sweetest little boy we knew. Thank you Henry. xxxxx
A very sad day at Drake Towers last week. Sophie died. Regular blog readers will know that Sophie is Elin's little squeaky Giraffe , who has been travelling to school with her every single day for years. She basically travels everywhere with Elin in fact and is her 'object of reference' for travelling-in-chair time. Sophie even comes on holiday with us (you may remember photographs of her frolicking on Blackpool beach in the Summer). Anyway last week I arrived home to a grim looking Paul and Caitlin who gently informed me of some bad news. Paul had arrived home to find Sophie lying in a puddle in the road. It was a hit and run. She must've fallen off Elin's buggy as my Mum met the bus from school that day. She didn't stand a chance immobile in the road at school-run time. As I gazed on in horror, Paul presented a weak looking Sophie and imparted the even worse tidings- her squeak was gone. They had tried to revive her by drying her out and giving her special squeak- CPR. But it was too late. Sophie as we knew her was no more.
I cried.
Yeah, I know. Ridiculous! Maybe I'm a little over tired lately? But seriously, Sophie has been everywhere with us and we've never once lost her. She's part of Elin. I cried a bit more as Paul and Caitlin began to give each other 'she's gone mental' sideways glances whilst attempting sympathetic noises. I felt not unlike Tom Hanks in 'Castaway' where he swims through the water crying his eyes out chasing after his friend Wilson. Wilson being a basketball he drew a face on and talked to for years whilst stranded on a desert island (don't mock till you've seen the film- heartbreaking I swear). Anyway Sophie was my Wilson. I talked to her, I made her talk to Elin. She made Elin laugh. I was bereft.
Despite my instinct to conduct a full on burial and short service in the garden (Paul and Caitlin by now had gingerly vacated the room, probably to find a phone number for a few men in white coats, leaving me to wallow in my grief) I decided that Sophie could live out the rest of her days in Elin's bed along with Monkey and Easter Bunny. She can still blow air over Elin from time to time where her squeak used to be. Pfffft.
Luckily basketballs and toy giraffe's are a damn site more replaceable than actual living, breathing things. Thanks to the gods of Amazon we are now in possession of a new Sophie with only a two day Sophie hiatus. Don't you just love the internet? But she will never be our Sophie to me, not until she has put in the same time and effort and had just as many adventures as the old faithful giraffe. Welcome to the Drake's (new) Sophie. You don't have to be mad to live here.... but it helps!
Old Sophie accompanying Elin to school earlier this year.
New Sophie.
PS New Sophie's squeak sounds different. It's not as good!! Wahhhhhhhhhhhh! WILSON!!!!
*Caitlin Plug Alert* So Elin has been enjoying watching this video today of Caitlin singing 'On My Own' from Les Miserables at a concert we went to see last night (too late in the evening for poor Elin to attend unfortunately!) Caitlin recently learned she has the part of 'Eponine' in the forthcoming school musical version of Les Mis so this was great practise for her! PLEASE excuse the hilariously shoddy video work at the end but Paul was crying so he couldn't see what he was doing hahaha. Enjoy, Elin fans! x
The other day I caught Elin sleeping in the midline- quite rare (her head is usually turned to one side or the other) and she looked so cute I had to share. She was snoring her head off! (She gets that from me unfortunately) Even though she looks so beautiful it was actually the prescience of monkey in the picture that really made me emotional- you see he has been watching over her since the first day she was born. They used him to hold up her ventilation tube sometimes when she was on ICU so he really has been there through it all- he looks a lot bigger in the first picture eh :-)
Happy weekend folks- sorry about lack of posts, inspection at work looming equals not a lot of time for updating. Normal service shall resume soon xxx
I've already done a throw-back this week so Im cheating but I just found this from September last year. I know I have had a few new blog readers lately (thank you!) so I thought I would re-post this, for those who ever wondered how Elin's story began. This was a guest piece I wrote for another blog written by a Midwife who posts a different 'birth story' each week and was keen to find out about ours. I could write a book on it but, with the constraint of a blog format and not wanting to send everyone to sleep, this is what I came up with. People were gracious enough to read it and be very kind about it. Thanks again to Clemmie for asking us to tell our story on her amazing blog which rocketed into the media stratosphere about six months ago when she wrote a fab piece about breast not always being best (and sadly sparked huge controversy as a practising Midwife between people who seemingly cannot accept a diversity of opinion on these matters). Anyway here it is for those who didn't catch it the first time. The beginning of Elin: http://gasandairblog.com/2013/09/11/ruths-story/
....Was not, you understand, sunny. Weather -wise that is. But it was sunny natured and that's better in my book. Our girl is back. She has been happy as larry all day and even sat in her chair for a good few hours whilst we went shopping this afternoon. A-MAZING. We haven't seen her like this for at least a week so we are delighted. Hope that's an end of whatever was upsetting her for a good while now! Of course I have some photo's to share...
Another tricky week for poor Elin, though the second half slightly better. Nowhere near as dystonic, but just not herself. Following our hospital visit last Friday, we went to the doctors on Wednesday this week as I was starting to feel there really must be some infection somewhere niggling away at her. He couldn't find anything at all. That's well over a week of poorly-ness for Elin, without any cause. A week without a smile from her is enough to send us crackers, it's heartbreaking but you just have to get on with it. Anyway happily by yesterday the famous smile had returned, albeit sporadically and today Paul said she even came off the school bus laughing. I really hope she is recovering from whatever has been bothering her, she doesn't deserve to feel this way. I always get a little bit introspective when she is poorly. It's like it reminds me of how serious her condition is, we are so used to her being so well and it's so easy to forget about the list of diagnosis' for so much of the time because she is just our gorgeous Elin. Also, you can deal with anything as long as she's happy and when she isn't- well, everything is much harder to accept again. Anyway I've also been thinking about all the time we have spent in hospital over the years. Not as much as some parents of course, but plenty more than others. We are lucky to have an amazing Children's Ward who know Elin inside out, it makes those necessary visits much less scary. On our last visit our favourite doc was there-the one who saved her at birth. He treats Elin like a celebrity. Actually they all do. One of the most pivotal hospital visits for me was the first time we had to rush Elin in when she was in full seizure mode. I was terrified. It marked a new beginning for us in terms of Elin's medication and treatment, and also in terms of what we were dealing with. Even though it was horrendous at the time and for months to come as we all adjusted (especially Elin) it's kind of funny to look back and see how far we have come and how some things can seem like the end of the world at the time. I hope we never have another 'pivotal' moment again but if we do I know we'll get through and come out smiling. Especially Elin, the comeback kid. So this weeks throwback is from that weekend on children's ward when Elin was two years old and I worried if things would be ok ever again and of course, they were. Happy weekend folks. I am hoping to spend it sleeping-catching up on all the sleep Elin robbed us of this week!! Have a good one xx
And one from this evening to brighten your day....
Well poor Elin is suffering with the evil, nasty, hateful, horrid affliction 'Dystonia' again at the moment. Just like last time, we watched helplessly as a switch seemed to flick off in her brain (it really is as quick as that) and she became too stiff and spasm'y to do anything at all other than be held and cuddled. Thursday was just about manageable with continual holding and regular changes of position. But by friday the Dystonia was off the scale again, just like a fortnight ago. She required her rescue medication at school, slept for hours then proceeded to wake up and continue to be gripped by Dystonia's powerful and unforgiving claws. We went to Children's Ward, knowing we were unable to give her a second dose of the rescue medication without medical supervision. She was given a second dose and mercifully the dystonic spasms cut out immediately. The registrar gave us instruction to up her Diazepam (again) with the only problem being that Diazepam is notoriously easy for the body to build a tolerance to, therefore basically rendering it ineffective. Elin has been on Diazepam for 20 months and I wonder if this has happened with her. For now we have to keep cranking it up until she is on the highest dose, then we can move forward from there.
We got home last night from the Ward and Elin had a good night's sleep (probably a side effect of the double-dose of strong meds). However this morning it wasn't too long before we observed the familiar dystonic movements. By this afternoon they were becoming increasingly strong and regular. The only way we have managed to calm her and stop the spasms currently is by lying her flat on the hard wooden floor (with a mat under her I hasten to add) where she now is fairly happily batting away at her chime -about toy and kicking her legs slowly in a very natural and 'normal for Elin' way. I have no idea why lying her out on a flat surface helps her, but it has done time and again. The inability to understand this dreadful part of her condition is hugely upsetting and frustrating for us as parents. No triggers, no pattern, no rhyme, no reason. No ability to help her. Just hoping it will go away again, or that an increase in meds will work (Im not convinced). Seeing her like this is incredibly difficult and exhausting both physically and emotionally. I can't imagine how it's making Elin feel (and if Im honest I don't want to imagine it).
For now I guess we have to manage this as best we can, whilst we keep our fingers crossed for a speedy response from Alder Hey's movement disorder clinic. Taking things day by day is something I've never been very good at, I like a plan (and I like the plan to work!) . I'm just not a 'see what happens' or 'go with the flow' kind of person. I'm a planner. I like to know what's what. My calendar is run with military precision, I never miss anything, I am never late, I never forget anything. I like to have answers to my questions and reasons for everything, especially where Elin is concerned. I'd love to be all bohemian and relaxed about everything in life but I'm just not. It's not very cool, but it's just how I am. However I'm learning that I don't really have a choice in this matter so sucking it up and getting on with it is the only option. (Yes, I'm still learning this after six years! It's a slow process, changing the habit of a lifetime!) So it's deep breaths and 'see what tomorrow' brings time whilst we silently pray that the evil Dystonia leaves our baby girl alone, because seeing her suffering and not being able to help is by far the single worst thing we have to deal with in this circus that is Cerebral Palsy. Pfft. Send in the clowns. :-( :-(
Ever wondered how to get passport photo's done for a severely disabled child? No, nor me! Until I had to of course (Disneyland Paris next Easter yaaaaaayyyyyy) which is when I realised things might be a bit tricky. Have you ever read the guidelines for a passport photo? Ridiculous! Why aren't you allowed to smile?? Not even a tiny weeny 'Im going on my holidays' sort of smug half-smile! Leaves everybody looking like they just escaped from an institution for the criminally insane on their passport, which can hardly be reassuring for border control. "Oh go on through Mrs Drake, I see you bear an uncanny resemblance to Myra Hindley. Have a nice holiday!!" Anyway this is not the only rule. There are about ten of them. Including things like you have to be looking square onto the camera, have your eyes open and your mouth shut. I went on a few forums online to get some tips from other Mum's about how to achieve this when your child cannot sit/stand/support themselves, has no head control, rarely shuts their mouth, cannot focus their eyes and laughs like a band each time they see a camera flash. I was relieved to discover that you can include a covering letter explaining your child's condition which is usually accepted, though they do like you to achieve as many of the guidelines as possible.
I tried a few times at home, you can get a computer programme which makes sure they are the right size etc. I just couldn't do it. So the next time I was in town I popped into Max Speilman and spoke to a very helpful girl who explained she had done it many times for disabled kids and she would wedge the white disc thingy (technical term) between Elin and her chair. She was lovely and reassured me it would be fine. I made a mental note that the next time Elin was tolerating her chair, passport pics would be first on our to-do list. Yes, I know it's not until next Easter- take it up with Theresa May! Anyway today was that day.
The girl in Max Spielman was so, so patient and understanding. She must've nearly run down her camera battery trying to get a good one. We tried Elin's chair all ways, but struggled with the fact that she kept turning her head from side to side (she can't stay in midline unaided particularly well). In the end we settled for a sort of semi-reclined position and we got one. Super hard also because Elin kept smiling! She needed to be in a good enough mood to sit nicely but not good enough to laugh each time she heard the camera shutter!! So it was tricky. But I must praise the girl in the shop, she really was amazing so were the people waiting patiently for her to finish with us. The end result is not going to get Kate Moss quaking in her boots but the girl is confident it fits the spec enough not to be rejected, so fingers crossed. Im just glad mine doesn't run out for another year so Im still 23 on my photo and fairly passable, I don't think I'll bother getting a new one until they get rid of photo's altogether and scan your eye instead or something (does my eye look fat/old/wrinkly in this????!!!) :-) Hope you're enjoying your weekend folks I'll keep you updated on the Passport saga as it unfolds. Lots of love xx
What the......? Mum???? I was promised a glamour shoot!!!
