London Calling

Far be it from me to over- sentimentalise anything (ha!), but as I've sat down to write this blog post Louis Armstrong's "Wonderful World" has come onto the radio. I have just realised that my favourite lyric from this song could not be more pertinent to this post, which is handy because I didn't know how I was going to start this one and here we are, four lines in. Thanks, Louis!!

I see friends shaking hands, saying "How do you do?"
They're really saying I love you....

Well, if Louis Armstrong thinks friends asking how you are is an expression of love then we are all feeling very loved at the moment!  The sheer amount of people wishing us luck before the big day and then asking how our appointment at St Thomas's Hospital in London went last Thursday (not just friends actually but professionals involved with Elin too) following our return has bowled us over. I always know that Elin has a team of people behind her, loving her and rooting for her but this was particularly apparent this week. I want to say thank you to everyone who spoke to me about it either beforehand or afterwards. Your interest means more than you can ever know and we are truly grateful. It makes everything just that little bit easier.
I have been saving a full explanation of the appointment for the blog, for anyone who is interested. It's taken a while to get my head around everything that the Neurologist talked with us about and I'm looking forward to getting his report so that I can reiterate it all in my own head. Until then I'll do my best to summarise.
Firstly, getting to London wasn't as bad as we feared. It is a journey we do regularly but not to pretty much directly onto Westminster Bridge! Leaving at three o'clock in the morning was not fun but it did mean that Elin was still very sleepy and had the advantage of night time meds in her system. So she sat beautifully all the way down, which made it much less stressful than it could have been. We got to the Hospital early enough for a parking space and a coffee! So a good start.
I had been nervous that we might not get to see Dr Jean Pierre Lin himself, as the letter stated it could be one of his 'team'. Dystonia forums had reassured me that his team were also excellent but in my heart I really, really wanted to see the main guy. He is the leading Dystonia expert in the country if not the world. When he came into the waiting room to get us I was so relieved! I recognised him from a lecture I had attended by him years before in Manchester, shortly after Elin had been diagnosed. Result!
The next good thing to happen was that Elin decided to dutifully display exactly how her Dystonia affects her within two seconds of being wheeled into Dr Lin's room.  Even though it's never easy to see her like that we were so happy that he and the two physio's and the O.T he had with him would see EXACTLY what we meant when we talked about Elin's seating issues. I needed to know he fully understood what we were talking about- difficult when you don't witness it first hand and not even easy to see on a video. So this was perfect. He also got to witness her immediate release of tension when I finally lifted her out and onto my knee.
Dr Lin was probably the most thorough consultant I have ever met. The appointment lasted three hours. THREE HOURS!! I have to say it made the 12 month wait and the big mission to get there an easier pill to swallow, because it was entirely worth it. We felt that we were being heard. We weren't rushed, he let us speak. He asked all the relevant questions you could hope for about all aspects of Elin's health and life, not just Dystonia related. He did many tests both physical and to see what her capacity for understanding was etc. He told us he believed she had amazing responses, object permeance, anticipatory skills, balance and overall understanding of surroundings. He said he was not expecting her to be so switched on and was hugely complimentary to us as parents (we told him Elin was the amazing one) and to Elin's school, who he could see had clearly been working carefully with her and intensively for years.  It's not that we didn't know these things, but to have a leading UK Neurologist confirm it felt pretty nice!
On to the Dystonia/Seating issue which lets face it is why we were there. Dr Lin believed Elin's major tone to be floppy, not dystonic or stiff. Aside from when sitting she is extremely floppy and relaxed he observed. He began to say that the seating issue was behavioural, at which point I protested- had he not seen her face, how terrific and distressed she was when we first came in? Surely this was an involuntary physical reaction, not a behaviour? He replied it was a bit of both actually and at this point provided a clear reason, for the first time, as to WHY Elin doesn't like her chair. It is, apparently, all to do with knowing where her own body/neck/head is in space. Sometimes, for whatever reason, she just doesn't feel safe in a chair or stander. This is largely to do with her floppy tone and struggling to control her head an neck muscles, which give her the feeling of falling. This is why, when we bend her over in the chair from the waist, she immediately cuts out the movement. She is in the foetal osition. She feels safe, gravity is helping and her neck isn't working to support her head. Her world has closed in around her in that position, so it follows that she feels happy there.
My next question was how come this behaviour presents itself sometimes immediately before she's even properly in the chair- could we really believe Elin was able to  know she was going in her chair and process how she felt about it that day so quickly? Dr Lin said it was clear that Elin is clever enough to anticipate, he had seen that whilst testing her, and that she absolutely knew where she was and what was happening so it was her way of telling us she wasn't up for sitting at that time. He said she also definitely knows that when she begins to thrash around, we will get her out of the chair. So it's a very clever process that is happening with her in this situation. I understood the logic here but struggle to understand why sometimes this is not the case. Why, sometimes, does Elin sit beautifully? Dr Lin said she was a human being with many different factors affecting her every day, moods etc. Sometimes she doesn't want to sit. Sometimes she is ok with it. That's all there is to it.
Whilst all this made more logical sense than anything we have heard before, I must admit I struggled a bit at this point (by struggled I mean I deserve an award for not crying the lump in my throat felt like it was choking me). This was mainly because I was hoping for a magic solution. By that I mean medication. I thought Dr Lin would have the perfect antidote to Elin's movement behaviour patterns in liquid form and we could sort this out for her easily and once and for all. Of course deep down I knew this probably could not happen. As Dr Lin confirmed, we would be medicating for a problem that is only happening sometimes. The rest of the time, Elin is mostly pretty relaxed- though this is partly down to the ant--dystonics she is already on. Throwing another anti-dystonic medication at her would just reduce her tone even more and take some ability and quality of life away from her when she wasn't in seating. She may also become used to any new medication and the problem would still present. Besides, he reasoned, he would always prefer to avoid adding more medication into a child's routine if he could help it.
So no magic wand then. Dr Lin suggested instead that we REDUCE one of Elin's medications. Never in a million years did we think we would come away with a medication reduction. But he thinks that if we gradually reduce her Baclofen (which keeps her floppy) and allow her tone to become a little stiffer, she may begin to use that tone to have more control over her own muscles and her neck and head. This should help her to feel more in control and more safe. It could also improve her ability to interact with technology, use toys, switches and communication aids in the future.
So this is the plan and this is what we will try. We have no idea if it will help in any way, but with the information Dr Lin gave us we are already working with the professionals surround ing Elin, plus the wheelchair service etc to tailor her equipment and care to this idea of keeping her in a closed position instead of an open one. ALAC are adjusting her chair to make the closed position more easy to achieve, so maybe in some small way that will help a little too.
We are seeing Dr Lin again in 12 months and I have no idea where we will be with this by then. Maybe nowhere. Maybe Elin's life will have been revolutionised. Who knows? We have to trust his experience and just see what happens. Nothing else thus far has worked and no other doctor has ever been as comprehensive in explaining the complexity of this awful movement disorder to us after all.
Ultimately though, what we took away from this long awaited appointment was a new perspective on this issue, a major appraisal of Elin's abilities by one of the top Neurologists in the country and, crucially, hope.
"Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence"
-Helen Keller.

So let's hope for a better future of sitting for our miracle girl, because when it's good it's very, very good (see above sitting and switching to ask for more bubbles) and when it's bad it's horrid.
Thanks for reading, folks!
xxxx

Hurricane Dystonia

The calm before the 'storm'..........

Every so often, Elin's dystonia will really get me down. Most of the time you just manage it as best you can and take the good times as and when they come. Sometimes, though,  it's impossible not to get a bit overwhelmed by the situation. Usually this happens after a really good spell, so you are reminded of how much easier life is when Elin's dystonia isn't bothering her and she will just sit happily in a chair. It doesn't feel like a lot to ask and yet the simple fact that Elin can quite often find it impossible to sit in her wheelchair has made, and continues to make, life really agonisingly difficult sometimes.
It's not the disability, ironically. Aside from the lifting, you can get really used to life when someone in your family has wheels where their feet should be. We have hoists, we have an adapted car, most places we would want to visit these days are disability-friendly. But show me a dystonic girl and your world can suddenly feel very small, since there is a Catch 22 of a 9 year old child who can't walk but can't sit in a wheelchair either.
It's heartbreaking for Elin, she loves to be out and about and nosey and sociable - when she is dystonia free. But if it has hold of her doing almost anything/going anywhere is either a huge mission or just impossible, especially now she is so big. She needs to be lifted in and out of her chair every five minutes. It's hard.
I get asked a lot what dystonia does to Elin when I'm trying to explain it. I think until you see it, it's hard to imagine. Elin will start by pushing down through her feet onto her chair footplate. Her head will start whipping from side to side. Her arms will fling out, repeatedly. Then the all-over body shaking, red face and gasping for breath will start. It looks pretty much like a full on epileptic seizure . Absolutely awful to see and god only knows how it feels for poor Elin. I would upload a video but that would feel like an invasion of Elin's privacy and besides you probably wouldn't want to see it. Needless to say when it takes hold there's no stopping it until you take her out of the chair, at which point thankfully she will relax. It's just that taking her out of her chair is no longer as easy as it once was- my bad back is testament to that. However the worst part has to be the car journeys.
Travelling anywhere when Elin is in the grip of dystonia becomes traumatic, stressful and upsetting. This weekend we were blessed with rare bank holiday sunshine and we decided to go the beach (given that we can never go far we are incredibly lucky to live an hour from the North Wales coast- it's so stunning) Elin's dystonia had actually been amazing all week, following a few awful weeks, so we thought we were winning. She was great on the way there, I couldn't wait to get her out and go for a gorgeous roll along the seafront. But for whatever reason (and there is no reason, or pattern, as far as any of us can tell) she just stopped being able to sit shortly before we arrived. Thoughts of walks were abandoned as we had to stop every few seconds to re-position Elin and make sure she wasn't damaging herself. In the end I found a bench where I could lift her out and Paul went back for the car to drive the rest of the length of the prom to get to the beach.  We parked her chair as close to the beach as we could then carried her down and quickly got her onto a picnic blanket, which thankfully she was able to relax and enjoy before eventually having to concede to the dreaded and traumatic journey home. I sit next to Elin's wheelchair in the back of the car now so I can attempt to comfort her. Nothing much works apart from bending her forward, so she's leaning right over her own knees, with my arm stretched around her back as I try and twist sideways to do so from my seat belted position. Not fun.
In June we finally have a meeting with the UK's leading expert on dystonia, Dr Lin at the Evalina Children's Hospital in London. It is a great irony that we have to travel for hours to get some advice, when travelling for hours is the one thing Elin can't do, but we really feel we need an opinion from someone who may have seen it in this particular form before. Keep your fingers crossed for us!
I share this post with tags in the hope it will reach someone else on the wonderful world wide web who is going through this. Most of the dystonia I have come across so far has not taken this form of being triggered by seating or standing frames (and yes we have tried every seat and wheelchair under the sun). If you're reading this and it sounds familiar please get in touch, I feel your pain!
In the meantime until we find a cure, if there even is one, we just have to continue to 'manage', which now unfortunately has started to mean thinking very carefully about where we are able to go and what we are able to do as a family more than ever following her growth spurt. I find myself struggling to say I wish Elin wasn't disabled because it feels like a betrayal of who she is, it feels like saying I want her to be someone else somehow, that she's not good enough- and that feels wrong. But I do wish with all my heart that she didn't have dystonia, right now I'd give my right arm to be able to go on a simple day out without it turning into a nightmare of epic proportion and without the three of us ending up exhausted and upset. It would be awesome to go for a walk without having to get a babysitter, to just do some really mundane ordinary stuff as a family together. It's like being hit by a Tornado, you have no idea it's coming you just have to hope for the best, wait for it to pass and deal with the results in it's wake. Probably no coincidence that bad attacks of dystonia are known as 'Dystonic Storms'. To go for a stroll on a bank holiday Monday instead of being house -bound (thank god for the garden) would be amazing. It doesn't feel like a lot to ask really, given what Elin deals with every single day with a smile on her face. She just deserves better. I hope the great and powerful Wizard Dr Lin can help and our trip in June isn't wasted! Because getting out and about and taking Elin to lovely places along with the rest of the world on a sunny bank holiday is something which I, in the words of Dorothy Gale, think I miss most of all.

On the plus side I must be developing arm muscle tone to rival Venus and Serena- no need for a gym membership when you have a dystonic nine year old! Every cloud. 

Have a lovely week, folks.

xxxxx

So what do you do?

Ugh. When you meet new people. Or old people, who know you've stopped work. I hate this question. It makes me feel inadequate- RIDICULOUS I know. But I struggle to say 'I don't work' since I finished teaching. I feel like this says something about my identity as a person, even though I'm certain it doesn't to those asking the question. However, fresh on the back of my 'unemployment paranoia' the other day someone asked me why I didn't work, despite knowing my situation with Elin, and then actually argued with my response as if it had anything to do with them and as if it was their sole mission in life to persuade me to go back to work.
Definitely fodder for a blog post, I thought.
So..........

A perfectly average week in the life of us (this is completely mundane information but multiply this by 52 weeks of the year and you get my drift)

Monday
Meeting 9:30am school w/Nurse.
Meeting 2:00pm w/Elin's Case Manager.
Scheduled phone call 4:00pm catch up and discussion of needs with Occupational Therapy.
Appointment at home 4:30pm Physiotherapy.
Tuesday
*No appointments!*
Drop off prescription at Chemist.
Phone Orthotist to check on boots progress.
Send email to Elin's case manager with links to upcoming equipment needs.
Chase appointment request with school inclusion officer via school.
Wednesday
Email Ed Psyche to confirm meeting at school next week.
Appointment 3:45pm w/new social worker.
Chase G.P as to why Medazolam medication still hasn't arrived.
Email O.T to confirm physio can meet here with her. Remember to phone school to check O.T can go in before this to see Elin at school.
Thursday
Phone incontinence service to check when next delivery of nappies due (as we will run out if I miss the fortnight-before order date).
Pick up and check medications from Chemist.
Post Elin's updated school records to case manager.
Appointment 3:30pm Orthotist intermediate boot fitting.
Friday
Take delivery of Elin's feeds and giving sets for the month.
Drop off another prescription.
Chase G.P referral for specialist Dystonia appointment still waiting to hear about.
Appointment 3:00pm - Pick up Elin from school and take to Hippotherapy.

Night Diary.
Elin wakes up usually around 2am for a change of nappy and sometimes a  change of sheets too.
Back to bed and pray Elin drops off quickly again.
Possible second wake up around 4:30am, may or may not go back to sleep.

Other appointments on other weeks in addition to those above include:
Cranial Osteopathy.
Dietician review.
Paediatric Neurologist @ Maelor.
Hips/Spine reviews @ Alder Hey.
Orthopedic Spinal etc review @Maelor.
Dermatology.
ALAC wheelchair services.
ALAC Orthotics/Splint castings and review.
Specialist Dentist.
Movement centre @ Gobowen/Standing frame fittings.
Hand Splints reviews.
Home hoist and sling checks and reviews.
Occupational Therapy home equipment review.
WAV Vehicle repairs (chair restraints etc)
Bath repairs and review.

Please understand that none of the above is in ANY WAY a complaint. I am delighted that Elin has access to all of the above and forever grateful to all of the professionals in her life for their care and dedication to ensuring her quality of life remains the very best it can be. But I just wanted to share the reasons why I choose to *currently* not add 'work' into this mix, since if I am asked about it I annoyingly find myself struggling to justify my choices articulately. I think I feel guilty. I don't know why. Guilt for not contributing to society in some way? Guilt that I'm fortunate enough to have the option? I don't know.  Then I hate myself afterwards for caring so much what anyone else thinks in the first place. It's taken me a while to realise I don't actually automatically owe people an explanation of why I chose to give up a job that I used to love. This post is definitely not meant as a justification either, but I finally felt ready to honestly and openly share some of the reasons why, as a parent of a child with severe and complex disabilities, going to work doesn't really fit into my schedule at the moment and doesn't for many others. I did it for eight long years following Elin's birth and in the end I couldn't make it work (I made myself ill trying, both physically and mentally). Some people do make it work of course and they are AMAZING. For me right now, the kind of teacher I could be alongside the job of being Elin's Mum is not the kind of teacher I would want to be.  Teaching simply needs more dedication and enthusiasm than I am able to give, especially in the current educational climate (and I could write a whole other blog post on that subject believe me). I loved my job more than anything once upon a time and leaving a school I called home and a staff that were family was beyond difficult even though I knew it was 100% right at the time. It's taken me 18 months to be able to admit "I USED to be a teacher" instead of "I am a teacher" because of some weird misguided sense of shame I carry around about being unemployed. I was 26 years old when I had Elin, I was always going to go back to work full time after having her, I never questioned it. I had a career. I looked sneeringly down from my ivory tower of pregnancy on Mum's who didn't work- I couldn't imagine it (I hate that fact now-maybe that's partly where the guilt comes from). Things change. "Life is what happens whilst we are making other plans" as John Lennon so accurately observed. It will always hurt, always be yet another "Sliding Doors" moment in my lifetime, but I am soooo thankful I have had the ability to make this choice, which works best for us right now.
Perhaps one day things will change again. Learning to live in the moment (as a bona fide control freak and someone who likes to plan)  is something I've been trying to train myself to do for the last ten years. I think I'm slowly starting to manage it.
I used to be a teacher. Now I'm just Elin's Mum.
And I love it.
Thanks, as always, for reading.

Happy Mother's Day to all the Mummy's out there if you work full time, part time or stay at home. You're all heroes. 

xxxxx

Elin's Diary #8

Last week was pretty uneventful really, as weeks go. But we like uneventful sometimes, especially after a busy half term! Elin had her usual appointments, but swapped Hippotherapy for Orthotics which was necessary but nowhere near as much fun. Boo! I went to London for weekend to visit family. Unfortunately, we think visits to family will have to be done this way (i.e in relay) for the foreseeable future. The journey down with Elin at Christmas was a bit of a nightmare. When Dystonia makes it impossible for her to sit, a five hour car stint becomes pretty impossible. What happens is that she ends up working herself into such a state that you just can't bare to put her through it. Red face, lathered in sweat, breathing even becomes compromised for her. It's awful (and scary) to watch so goodness knows what it's like for Elin. The last time we attempted the train down instead was a nightmare too so for now it feels like there isn't an easy solution. This is obviously really upsetting since a large chunk of our family live in London. We are still waiting for a referral to Dr Lin, Dystonia expert at The Evalina Children's Hospital and it can't come quick enough. Elin's seating issues have affected her life experiences for way too long (meaning forever!) and now she is getting big the issues are amplified tenfold. Simple things like going away for a couple of days as a family can be traumatic for Elin. It's a part of her condition I find hardest to accept. She so loves company and different voices and new experiences but it feels impossible to expose her to these things when she can't sit in a chair or be in a vehicle. We just have to live for the times when she can manage it, and there are times, I just wish it wasn't so inconsistent for her.
Anyway as I enjoyed a lovely night in London (it still blows my mind that I can be in London in a couple of hours from Chester- it literally feels like you've landed on another planet when you get to Euston), Elin played her Daddy up something rotten and kept him up pretty much all night. Oh dear! Paul always says he can never sleep when I'm not here anyway, I think he feels the weight of responsibility of keeping one ear out for Elin waking up (usually my job) but I think it does him good to know what it's like to be 'on call' all night! In fairness he is as wonderful early morning as he is hopeless in the middle of the night so this division of labour means I get a lie in on a Saturday and Sunday and in school holidays which I'm happy to trade for a full night's sleep the rest of the time. I really, really don't like early mornings!
So I got back from London on Sunday and Elin slept really well (ha!) then it was back into the school routine again except this time with the unwelcome guest, the 'Beast from the East' !! Yep, this week we've had snow falling snow on snow, snooooowwww on snoooowwwww and it really feels (as if it didn't before) like a truly bleak mid-winter.

A Dystonia free happy journey in the car to the Cranial Osteopath this week, complete with home made, hand knitted Giraffe hat!! Erm...not by me obviously. I can't even hem my own trousers let alone knit, despite being quite adept when I was around nine years old thanks to my Nan. I think I even made a blanket once. I guess the novelty wore off! Anyway the visit to the Osteopath was a big success, Elin loved it and slept ALL NIGHT afterwards. Worth every penny. We've also noticed she's been breathing better since her visits started in December too. I always err on the side of caution/scepticism when it comes to alternative therapies but I'm open to try anything because I just don't think it can possibly harm. Cranial Osteopathy worked for sure when Elin was a tiny baby and I think it's working for her again, in a gentle and subtle way. Anything that makes her feel relaxed is a bonus in my eyes. I think she deserves a bit of a pamper now and then!
Following this, the weather sort of went off-the-scale crazy. We started to feel like we were in "Dr Zhivago" each time we went out of the door (minus the cossacks). This led to Elin having a self prescribed snow day today and it's not looking good for tomorrow either...

Elin kept toasty warm inside the cottage!! I hate her missing school but in temperatures of minus five and roads to us covered in snow and ice it's sort of inevitable. Sometimes you just have to give in to the elements.
Being off school gave us time to try our "World Book Day" costume on. Elin's school isn't doing it until next week but I thought we might as well have a practise run. I'm glad we did! Her costume looked GORGEOUS ...but it was too small! Arghhhhh!! Also when you have a child that lies/sits pretty much all day a giant stuffed hood maybe isn't a good idea. Neither is a onesie (that's too tight) when you factor in nappy changes. So it's back to the drawing board for me (fear not I have an idea- Don't panic Captain Manering!!) but of course I have to share the photo with you because it's just too cute not to. I think someone special to us who might be reading this would love this costume in particular, such a shame it wasn't to be. You have to imagine it, of course, with a lovely vintage suitcase and a plate of marmalade sandwiches....

How sad that Paddington Drake wasn't meant to be! Tune in next week to find out what the more sensible alternative is (disclaimer: it's not as good). Damn you Cerebral Palsy and your costume restrictive issues! Still, we'll alway have this amazing photo and I got to spend the afternoon cuddling a real life bear so it's not all bad.
Hope you all have a great week, stay safe in the snow if you've got what we have!
Thanks for reading as ever,
Ruth x

Half Term

Hurray for half term and lazy mornings! Elin has had a lovely week, she even managed to do some super sitting in her chair (and some not-so super sitting too of course!) so we're really proud of her.  The week kicked off very nicely with a visit from Caitlin who was home from Drama School in London to celebrate her 20th birthday.  Of course, Elin was absolutely delighted and had an added treat of actually having Caitlin putting her to bed, which she loved. I felt really sad when I realised that Caitlin wouldn't be there when she opened her eyes again in the morning, Elin just adores her so much it's hard to contemplate what her little mind is thinking when Caitlin is not around. I know that Elin very much lives in the moment and so I try to remember that but still, seeing them together and knowing they have to be split up again tends to make me a bit emotional! I sometimes worry that Elin is a bit lonely on the weekend or in school holidays with only Paul and I to play with.

This is what Paul came back with from the kitchen when I told him we needed a candle for Caitlin's cake!!!!!

Elin so enjoys company and especially being around children- which we saw yet more evidence of visiting our family in Yorkshire again this half term. At the start of the week we spent a lovely (but snowy!) couple of days with Elin's nephew, Gruff,  who you might remember from past posts :-)   Gruff is the son of Elin's big brother, Gareth, and his gorgeous wife Marianne. Gruff and Elin are pretty good buddies :-) Anyway this visit, Gruff was especially loving and Elin was especially happy about it. Gruff did not leave her side, whether he was 'brumming' his cars over her face, playing peek-a-boo with her, or basically just cuddling her to death. It was GORGEOUS!!

Gruff just playing  bit of body percussion on Elin!!

Big cuddles

When we returned from Yorkshire we decided a rainy Wednesday would be a good day to take Elin to the pictures. She hasn't been for ages and with here dystonia playing up a bit lately we weren't sure if she would enjoy it. Wow we were so wrong! She loved it and for the first time EVER she sat in her chair through the entirety of the film! We saw "The Greatest Showman" hoping that a musical would keep her entertained and it really did- I don't think we've ever seen her laugh so much in the Cinema!! She absolutely loved it.

Elin then had an important appointment on Thursday at the Movement Centre in Gobowen. This was an appointment following on from the one I blogged about at Christmas, to be fitted for a new standing frame which she will use for 30 minutes a day at home to do focused head control training. The frame fitted like a glove and Elin looked very straight in it which was lovely. However, we are having massive issues with Elin's feet at the moment. The tendons in her ankles are very tight and it's been increasingly difficult to get Elin's feet anywhere near flat. Her current splints and boots accommodate this curvature but do nothing to correct it. This means because she is so vertical in this particular frame the feet end up resting in a very bad position and the splints put too much pressure on her skin and cause pain and markings. She's basically standing on her toes :-(Staff at the Centre are going to work hard with physio's and the Orthotist at Wrexham to see if we can get some more corrective splints cast just for wearing in the frame, to encourage her foot to be more flat and in a better position. It was a shame we can't start the therapy in the frame straight away but we were all agreed the benefits would be minimal unless her position and comfort are paramount. 

 Elin also managed to visit her Great-Grandad and Great Nanny this week but I stupidly didn't get any photographs! Finally Elin has just been rounding off her busy half term chilling out in her room. We've seen some more good sitting in her house chair (and again, some not so good!) she has managed over an hour at least twice this holiday! Wow!

We even managed to find some time to paint Elin's nails an awesome sunshine yellow colour!! Better make sure we remove it before Monday, even though it does actually match her school uniform. Strike a pose, Elin! 

So, it's been a lovely holiday (even though I seem to have acquired a nasty bug- fingers very firmly crossed that Elin doesn't get it!) but I think Elin will be glad to go back to school on Monday for lots of fun with her friends. 

Just including this picture because of this amazing dress!! It was a Christmas present, what a lucky girl!!

Hope you all have a good week folks. Until next time.

xxxxxx

Elin's Diary #7

Just look at this little beauty all snuggly in her winter Aran jumper! Lately I have been catching myself staring in complete shock at how big Elin is getting. It makes me feel so proud that she is so well, healthy and happy as she slowly approaches her 10th birthday. It also makes me panic. I'm not ready for her to be bigger, or older. I worry about what this means for her. I know she has years and years left of schooling before we have to think about what happens when she is no longer in full time education. But the last 10 years suddenly appear to have passed in the blink of an eye. Caitlin was 20 yesterday (coming home for snuggles with Elin this weekend) and believe me it feels like she was 10 about a week ago!!  Paul is great at not thinking about things until we absolutely have to, but I am a bit more of a worrier. I also hate change, so it's difficult to think about Elin growing up from a child into a teenager without having an element of fear underpinning my pride in the amazing person she has become. I guess I also have to think about just how far she has come in those 10 years too, though. The difference in her now to when she was a baby is incredible. She has developed and improved in ways we never thought imaginable. So from that angle, the next 10 years are also potentially very exciting. That's what I have to remember when I feel scared. 

As well as looking forward this week I've also been looking back a bit! This is a photo of Elin with Alfie. Alfie is the son of one of my oldest friends and one of my four fab flatmates from Drama College in Edinburgh. Laura and I hit it off right away when we met back in 1999, both of us hundreds of miles from home and sharing a black sense of humour, a love of cheap fizzy wine and an obsession with the Spice Girls (I know, I know, don't judge me it was the 90's!). Anyway Laura was able to visit last week from Stratford where she and Alfie are living with Alfie's brilliant Daddy who is currently performing with the RSC, a bit closer to us than their permanent base in London, so we could finally introduce Elin and Alfie, which was just lovely. It's so weird when one minute you're holding each other's hair over the toilet bowl after an over indulgent student house party and the next minute you're children are getting to know each other!! Elin is one lucky girl to have so many people who care about her in her life. 

In terms of actual activity this week Elin hasn't been up to much outside of school, what with the weather deciding to be apocalyptic again. She took her traditional Valentines balloon into school for her little boyfriend Llew and enjoyed making a snappy green crocodile baguette! She's also been enjoying some painting and listening to sensory stories. The above picture was taken today at her weekly horse-riding session at the Clwyd special Riding Centre. Paul and I were super impressed today as she had been pretty dystonic in the car on the way, so we wondered how much benefit she would get from today's session. But as soon as she was on the mechanical horse she totally relaxed and settled into it's rhythm once again which was so lovely to see. Today the physio worked on getting Elin's hands into a nice relaxed position and we were thrilled to see how well she did! Her hands stayed like this for the duration of the session, so good progress was made again. 

Well today marks half term for us! We are looking forward to seeing Caitlin tomorrow when she pops back home from London for her birthday and then we are going to visit family in Yorkshire for a couple of days. After that, Elin has a couple of appointments (one important one at the Movement Centre!) so I know I'll have a lot to update with next time. Until then, thanks for reading and have a great week! 

Ruth xxx

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

Elin’s Diary

Welcome to ‘Elin’s Diary’ which I’m hoping to update every Sunday reflecting on the past week of adventures! (Perhaps with the odd post in between, too). It’s been overall a good week for our little sunshine girl. She has been slightly off colour - something I’m putting down to the flu vaccine last weekend but is more likely just a little cold or virus with all the excessive secretions that have been plaguing her.  She even had a rather long nap at lunchtime in school more than once this week! Oh dear Elin how sad! She’s not done that since she was a tiddler.  Apparently she was snoring all over the classroom I’ve no idea where she gets those bad sinuses from! (Me) Although we don’t think she demonstrated appropriate remorse! I think detention is the only way forward.

On Friday I missed an apppintment in the athsma clinic for the THIRD time. I can only conclude that my sub conscious being really, really doesn’t want to go or that any *rare appointment that I have for myself with a healthcare professional just never quite arrives on my radar, even though it’s repeatedly written on my calendar! I’ve never once forgotten an appointment of Elin’s so why I can’t muster up the enthusiasm about my own health to remember a five minute check up is beyond me- maybe I’m scared somewhere in my psyche that I’ll be told red wine causes wheezing!! But I do think that the seemingly endless amount of appointments for Elin in the last six months or so has created a bit of a brain malfunction on my part. Perhaps you can carry around too much information in your head and you sort of short-circuit. I feel a bit like I’ve short-circuited! Yesterday for the first time ever we ran out of one of Elin’s medications. I had forgotten to pick up the new bottle from the Chemist. I rooted through the cupboards in disbelief of my own idiocy even though I knew they weren’t there. As I turned the bottle upside down and shook out every last drop, like in that Tomato Ketchup advert from the 80’s, I felt totally gutted. Elin is so vulnerable and reliant on us being on top of everything. Feeling that you let her down even in a tiny way is horrible. Yes we all make mistakes but being wrong is not one of my strongest points! Luckily for us we managed to elicit every last drop out of the bottom of this medicine bottle- taking us up to first thing on Monday morning where the new bottle will hopefully be waiting patiently for me in the Chemist. This barrage of appointments for Elin we seem to have been experiencing is not necessarily a bad thing though, I’m not complaining, she has an amazing team of professionals around her ensuring that she gets the very best care from all angles and for that we are forever grateful (I just wish my brain cells would stop feeling so frazzled and start working at full power again-if they ever have been)

For example, on Friday Elin got to start ‘Hippotherapy’ again. Sadly this is nothing to do with actual Hippo’s (shame!) and instead is a horse riding therapy for the disabled. Elin’s muscles, joints, spine, head control and pelvis are all given a good workout whilst on the back of a mechanical horse with a physiotherapist. One day she may migrate to real horses, but obviously there is a risk there now she is so big and a lot of responsibility for the back-riding physio to keep her safe. So a mechanical horse it is for now, which mimics the movements of a real horse. Elin loved it! It’s so wonderful just to get her doing something new that she enjoys and if there are physical benefits then all the better. 

 

The Clwyd Special Riding Centre is an amazing place which would never run without donations and volunteers. It blows my mind that this sort of opportunity is open to Elin because people are willing to give up their free time to make it happen. The generosity of the human spirit never cease to amaze me. We are very much hoping this is something Elin can continue to enjoy for some time to come.

Elin’s also had a really lovely weekend because it was her Great Aunty Brenda’s 90th Birthday Party! Wow! That’s quite an age and Elin was absolutely delighted to be out at night! In fact she was so good and so pleased we began to wonder if she thought the party was for her! It was a special treat that big sister and all round favourite person Caitlin travelled back from London for the weekend to sing at the party. She brought the house down as usual but what was lovely for me was to see how excited Elin got when Caitlin started singing. She just adored it. Usually I would shy away from taking Elin out at night because I don’t like to upset her routine (or things just aren’t suitable for her) but I’m so glad we did!!! I realised that I get used to going out in the evening without Elin and you always feel like you are missing a limb. It's a feeling you make yourself get used to for practical reasons but it never really goes away. So it was so good to see the extended family together and have Elin there alongside us. I’ll leave you with some pictures of Elin trying to steal Aunty Brenda’s thunder and wish you a really good week. Thanks for taking an interest in our miracle girl 😊
Ruth x

 

   

 

Xxxx

Mission Disney

It's difficult to articulate why taking Elin to Disneyland is so important to me. It started I suppose with an early Disney obsession. My twin sister and I would devour our Disney VHS's until they were worn out and even had a video of sing-a-long songs filmed at the holy grail of imaginative destinations, Disneyland. God how we begged to be taken there! As we made the transition from kids to teenagers, films like 'The Little Mermaid', 'Aladdin' and 'Beauty and the Beast' seemed to represent an escapism from the unsettling strangeness of impending adulthood and maybe that's why we think of them so fondly. My walls at fifteen years old were covered with Brad Pitt, Leonardo Di Caprio and Johnny Depp but also 101 Dalmations and Lion King posters. Before you dismiss me as a massive saddo I promise I was not alone! It was the golden age of Disney and maybe the golden age of a certain kind of pre-social media/mobile phone innocence lost forever now I guess in the world of early teenage years.

Luckily for us we got to visit Disneyland in the end for our 16th birthday (thanks Mum and Dad!!) in Florida and it really didn't disappoint. So Disney takes up a lot of my happy childhood memories and I think sub-consciously I always thought its something I could share with my kids one day. That's the thing about loving Disney films, it transcends generations, from the 1950's classics up to the present day. Even your Nan and Grandad know Disney films, it's just part of childhood nostalgia. 

So of course I had this dream of taking Elin one day, especially since I know they are geared up so well for disabled guests. This momentous moment happened in 2015 when we went to Disneyland Paris (Florida deffo not an option with Elin's hatred of travel and heat!) and we had a wonderful time. Elin's Daddy did not grow up with a huge love of Disney like I did (although he does love Buzz Lightyear haha) but it took all of half a day for any 'corporate money-grabbing' scepticism to disappear. Its the magic, it just sucks you in! So we had such a wonderful time that I said I didn't want to go back in case it wasn't as good and it spoiled my memories. Well that lasted just over two years then with the advent of an incredibly good health spell for Elin, we decided it might be time to go back. 

I was WAY calmer this time. In fairness Elin hadn't spent the week before we went in hospital so that did make things a little easier! 

The thing is, getting Elin anywhere with her dystonia can be a massive mission. Or not. Depending on the day and her mood. Getting Elin anywhere with her dystonia AND enough meds/nappies/tubes/feeding equipment etc etc can feel a bit like a "Mission:Impossible" to be honest. So as Elin's Daddy packs two T-shirts, one pair of shorts, some pants and some ginger biscuits (yes really. An absolute necessity apparently!) I am a slave to lists, baggage allowances, suitcase spaces and travel arrangements for weeks before. That's without the worry of accidentally breaking one of her epilepsy medication bottles en-route. Not an easy time to control my anxiety, but something I have to suck up and get on with if we want to go.

Reflecting on the way back this time (if you've been following my Instagram you will know we had the most incredible time but more importantly, Elin enjoyed every second which makes the mission completely worth it of course) I thought about just why it's such a big deal to me. I think it's because even just getting out there and back without any dramas feels like and incredible achievement. Seriously. I didn't forget anything vital, I managed to get everything into two cases plus hand luggage meaning Paul could wheel the cases and I could push Elin's chair (apart from hanging stuff on her chair you effectively only have one pair of hands to carry all the luggage which is why packing is so problematic), Elin was well the whole time we were there, there were no train delays (would have been a nightmare with Elins dystonia). It went as smoothly from start to finish as we ever could have hoped. So even all that means the holiday went well. To add into the mix that Elin actually visibly had the time of her life, so much so that we both welled up a fair few times each (ok, we both actually cried at least twice each), is the icing on the cake. It turns a great holiday into the best holiday ever. The only thing missing was Elin's beloved big sis, back at Uni for her second year, but once again we thanked the technology gods for face time and we didn't have to miss her too much!!

Elin wanted for nothing. She went on almost every ride that was available to children. Not to mention watching the street theatre, parades, musical shows (west-end standard but a lot shorter) and meeting characters (the actors are wonderful and talked to Elin beautifully, she was captivated). The French, it would seem are not quite so uptight about health and safety as they are here in the UK. If her chair wasn't able to go on a ride, they let us carry her on and sit with her. Joy!! This common sense attitude literally changed her experience into an amazing one. You've only got to look at her face of the 'Dumbo The Flying Elephant' ride to see what I mean. She was in heaven, therefore, so were we. 

For our part we were pretty exhausted coming home. The lifting gets to you after a day or two, in the absence of a bed/changing platform/bath at the correct height in the hotel room but also the lifting in and out of her chair for cuddles all day in the park if her dystonia played up a bit (thankfully it was for the most part entirely under control)Also,  there is still a kind of level of stress involved in taking Elin away, however swimmingly things go. This was evident in Paul's utter panic when Elin fell asleep during the parade (she rarely falls asleep in the day time). I was returning from the shop and could see the panic on his face- he said she was laughing one minute and the next minute he couldn't wake her. Between us we quickly worked out that yes, she had actually just fallen asleep! She was exhausted from all the fun and soon woke up again!! But Paul (who literally never usually panics) said his heart just dropped into his stomach because it suddenly hit home that we were in a foreign country and how vulnerable Elin actually is and in turn how vulnerable that made him feel in terms of if there had been an actual health emergency. The reality of our situation is never too far away.

So I love taking Elin to Disney because it feels like completing a massive mission successfully and achieving the once-impossible. It felt like a dream had come true when we walked through those gates and saw the iconic pink castle again . Just getting her there felt like a victory, we were on top of the world. I could take my daughter to the embodiment of my childhood imagination after all and not only could I take her but I could watch her having the time of her life just like everyone else. There was a time, when she was younger and pretty poorly that it felt impossible. But I guess it goes to show that dreams do come true after all, just like Disney would have us believe. In Disneyland Elin is truly equal to every other child because there's nothing they can do that she can't. Obviously her experience is different, but it's not less. 

Just like her. Different, but not less.

This was supposed to be our last visit, before she gets too big to lift. Somehow I don't think it will be.  The bubble of equality and happiness there is like a drug, once you've had it you want more! So until our next 'hit' Disneyland, au revoir......you really were the best :-)
Thanks for everything.

When you wish upon a star

Makes no difference who you are

Anything your heart desires

Will come to you.

If your heart is in your dream

No request is too extreme

When you wish upon a star

as dreamers do.

Like a bolt out of the blue

Fate steps in and sees you through

When you wish upon a star

Your dreams come true.

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