Girls just wanna have sun...

Where else in the world, other than Llandudno, would you get photo-bombed by a seagull?

Nowhere!!! We took total advantage of this Friday's INSET day to escape to the seaside. We had absolutely no idea how Elin would be, especially given how she was last time we went to the seaside (see previous!). However, this time was a totally different kettle of fish. Goes to show how things can be so devastatingly different for no palpable reason in Elin's life. For whatever the cause, Elin was 100% happy to be out for the day and equally to be in her chair. This meant we had as near a perfect day at the seaside as you could wish for. 

With Elin, you kind of know within about five minutes of her opening her eyes whether she's going to have a good sitting day or not. Today, all the signs were good but we still weren't sure- it's a fair drive to the coast after all. Today, that didn't phase her one bit. It was smiles galore and we couldn't have been more happy or relieved.

As we rolled down the prom, we came across several children just like Elin, all in chairs and all clearly with smilier conditions to her. What's amazing is, without hesitation all the chairs stopped together to talk to us. It turns out they were a local school on a trip. They didn't pass by with a smile, they stopped. We didn't know them at all, yet we knew them inside out. We exchanged names and chats with all the children and there was even another little girl with the middle name 'Haf' !! The school staff were so lovely and clearly dedicated, it reminded us of Elin's school. This is sometimes what I absolutely love about being out and about with Elin, you find like-minded folk and it's like you're all part of a special club. Elin grinned widely at the children from the school and there was an unspoken agreement amongst the adults and carers that we were amongst the company of some really special and amazing kids. It's a camaraderie. I knew then that today would be a good day. It really was.

Elin loved the pier. She got some cool new red glasses and I got to obsess about what would happen if the pier randomly collapsed while we walking over it (I will never get over this fear when walking on a pier, but it's under control I promise). It really is hard to beat North Wales in the sunshine, it's just that North Wales is so rarely sunny that this is particularly easy to forget. But of course, the minute the sun comes out the long winter days are forgotten. Especially when Elin is doing good sitting. 

"On a clear day, you can see forever" said The Queen (and by that I mean Shirley Bassey)

I swallowed my deep rooted fear of the pier and afterwards we went for lunch, predictably but reliably, to the St George's Hotel. Paul nearly made the mistake of getting Elin out of her chair but we have learned that whilst she is happy, that's exactly where you should leave her. The staff were lovely and did their upmost to accommodate Elin, who clearly thought she was pretty special :-)

Following lunch, where I went to the ladies for probably less than two minutes total and Paul managed to order me the wrong sandwich in my absence (seriously, I have prawn practically everywhere we go but Paul decided I'd said Salmon- something I haven't eaten ermmm..since...EVER because I HATE IT!!) when it arrived and I explained politely it wasn't what I'd asked for to which the waiter replied 'Well, it's what your husband asked for' I couldn't believe it! I bit my tongue against the knee jerk classic 'I only gave you one job!!" and luckily the lovely waiter saw the funny side and to save a fellow male in distress brought be the correct order in no time while Paul looked sheepish and I looked hungry. "They're both pink fish" Paul reasoned. I reasoned that he better leave the waiter an extra large trip and give me the lion's share of the chips. Tidy.

After lunch we took a VERY long stroll down the promenade. We were on an absolute high that Elin was sitting so nicely and enjoying herself so much. I don't think she stopped smiling all day. It felt amazing to walk along without any stress or seeing Elin in distress. Eventually we got to the 1950's Butlins-style paddling pool, which had a definite charm since it's refurbishment and which was still relatively quiet given he local children were still in school. We had a sunbathe by the side and then of course Elin needed to get her feet dipped in! Just heavenly in the heat and we actually ended up staying there much longer than we had anticipated. This was the first time we had got her out of her chair all day. Unheard of!

Not long after this and after being unable to find a Mr Whippy in the vicinity we decided to cut our losses and go home whilst the going was good. Elin had literally spent hours in her chair and regular blog readers will know what this meant to us. We were so happy. She even continued the good spell all the way home.

Today was the chalk to the cheese of the last time we went to the beach.  I think it served to reiterate to me what I have always known since Elin came into our lives- that is, you can never expect two days to be the same and as bad as one day is, another will be as wonderful in equal measure. The bad days will make you appreciate the good days all the more. The shadow, as ever, is just a part of the light.
Have a good weekend folks, tonight we are hitting the hay grateful that the capacity for great days is still as within our reach as it ever was, grateful for the smiles, the health and the happiness of our girl.  We can't really ask for more than that, can we?
Ruth xxx

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