Little Miss Swiss

I think I've just broken my own record for the longest time between posts! During this time Rosie has been unwell with a chest and ear infection (for over two weeks). It's been a long time since she's been under the weather so she deserved to have a good run at it! I'm pleased to say she's much better now and as a result is moving on leaps and bounds – making up for that time lost nose blowing.  I've also been busy preparing and practicing for something I never thought I'd see myself doing in a million years... a public talk to 200 odd people for Mencap which takes place this Friday in Birmingham. I'm so far out of my comfort zone my legs are going to jelly just typing about it! I'll let you know how it goes (if it goes well of course!).

For those of you that have ever wondered where Rosie's surname comes from; it's of Swiss origin. I myself am dual national (well treble if you count England and Scotland as two!) and therefore Rosie is one quarter Swiss. The reason I mention this is that I wanted to share a video with you (below) of my Dad and Rosie enjoying a Swiss nursery rhyme together. Rosie seems to be embracing her Swiss roots well as I haven't a clue what they're singing about but she appears to have full understanding of what's going on!

What I love about this video is how Grandad just 'gets' Rosie, they always interact so well together regardless of which language they converse in! When she swipes for him (it's affection) near the end he doesn't even flinch.

Rosie has an amazing and unique bond with all of her grandparents and we feel very privileged that we have all of their support. It seems a bit silly saying that now – of course they all love Rosie to pieces but I have read a lot of bits and bobs around social media recently that have really made me appreciate just how lucky we are to have such genuine support from our parents.

Rosie also had her (now annual) Cardio check up last week which provided myself with a full on work-out trying to restrain her! It really isn't a traumatic experience in terms of pain, its exactly the same as having a scan when pregnant, same procedure, same machines just over the heart area. However Rosie has been through so much in her early days that she tends to get very distressed when any medical professional comes near her. Even a simple visit to the Doctor will end in a minor hysterical meltdown. As soon as the consultant had finished and we sat her upright she smiled and laughed, chatting away to him as if the previous five minutes of seeming torture hadn't even occurred!

I'm delighted to say that everything appears in order. After the last scan she appeared to have residual leakage from the valve but even that has cleared up so we came out feeling extremely happy and, as always, eternally grateful to the wonderful medical team that made all this possible.


Grandad Future's Rosie from The Future's Rosie on Vimeo.

What a team!

Well what can I say about yesterday?

I've tried thinking of suitable words; Proud, emotional, humbled, grateful, tearful... but nothing comes close to explaining how I really felt seeing everyone, runners of all abilities, in their green Running for Rosie & Friends 2014 T-Shirts, pushing themselves around the 10km Great Manchester course in blistering heat – all for South Manchester DS Support Group. Okay some may say "it wasn't THAT hot" or, "I've ran in hotter weather" however the problem lay with the fact the temperature had increased by at least 10 degrees to those everyone had been used to training in, so it was a big deal for the vast majority of people out on the course. The ambulances and constant flow of paramedics on bikes was all the evidence needed to prove that. It really was a titanic effort from 'Team Running for Rosie & Friends 2014' and the post run meet up and drinks in the sunshine were a very welcome reward!

The main achievement came when I realised we had smashed our initial fundraising target of £2500. At the time of writing this we are at a staggering £3180 and counting...! The donation page for this event is open for another 4 weeks so if you'd like to donate you can still do so by clicking this link: https://mydonate.bt.com/fundraisers/runningforrosie

Thank you so much to everyone who not only ran but to each and everyone of you who so generously donated to a cause so close to us, especially in these difficult financial times. Also a special thank you to Anytime After 9 Ltd for so kindly financing our brilliant T-Shirts!

In this instance I think photo's speak louder than words so I leave you with a selection of our images from the day which should hopefully illustrate the effort we went to as well as the fun we had!

Taking a stroll

In true Rosie fashion any worries and anxieties raised in last weeks post were swiftly put to one side (for a short while at least) when she walked across the room for the very first time with the aid of a baby stroller in front of 'Mummy' and her physiotherapist.

Karen quickly caught the moment on video and sent it through to me at work with the message "Look at our girl!”. I assumed it would be a clip of her standing up holding onto the stroller before dropping to her bum, but when I played the video (edited version below) and saw her walk across the room I'm a little red faced to admit that my jaw dropped and the tears came on, full flow whilst sat at my desk! I had to run out of the studio to compose myself and then proceeded to watch it over and over for the next five minutes! 

I really didn't anticipate seeing her do this anytime soon due to her legs and arms still appearing so weak because of her hyper-mobile joints. She has obviously moved on much quicker than I had thought as this huge step shows in itself the improvement of strength to both her legs and arms.

I'd like to end this post by sharing one of the simplest and most precious moments I've known yet as a parent...

Yesterday morning (as is often the case of a weekend), the kids all piled into our bed and we were chatting, having fun, giggling along with Rosie when Joe just suddenly turned to Karen and said:

"Thank you Mummy".

"What for?" replied Karen.

"Rosie" he said.

Rosie-Strolling from The Future's Rosie on Vimeo.

Ever felt like pulling your hair out?

..."Might be a bit of a struggle in your case Tom!" I hear you say. However for Rosie things are a bit different. To be honest with you this post doubles up as a cry for help/advice/reassurance as much as anything else.

We have started to notice recently that Rosie's hair has started to thin at the front and a few scabs have appeared in the same area. It hasn't been until the last couple of days we've really noticed she has definitely lost hair and is developing a bald patch.

It was difficult to tell for sure how this was occurring until yesterday when our suspicions became evident – Rosie is pulling her own hair out. Karen came into the room and saw Rosie pulling at her hair and noticed a big clump of hair lay out in front of her.

As you do (not always the best advice) but instinct often takes you to Google to see what the cause may be. I'd love to say she's trying to look like me but joking aside it's clearly more concerning.

We had two thoughts initially, one that she may have an irritation on her scalp (hence the little scabs) and she's trying to attack it, itch it but grabbing at her hair too OR she has some deeper underlying issue. Google took me to something called 'Trichotillomania'.

From www.trich.org: "Trichotillomania (also referred to as TTM or "trich") is currently defined as an impulse control disorder but there are still questions about how it should be classified. It may seem to resemble a habit, an addiction, a tic disorder or obsessive-compulsive disorder. Most recently, it is being conceptualized as part of a family of "body-focused repetitive behaviors" (BFRBs) along with skin picking and nail biting."

This morning Karen took Rosie to the doctors and both our suspicions were discussed as a possibility. Obviously our hope is that she has nothing more than a rash and the antifungal shampoo she has been prescribed will clear it up, relieving any irritation, however we have to think of the possibility of it being a behavioural disorder of sorts and how we might help distract her, prevent, or teach her to stop before it has a permanent lasting effect on her hair. Obviously the fact Rosie is very young and has Down's syndrome makes reasoning with her almost impossible at this stage.

If you have any experiences of something similar, any advice or better still reassurance it would be very much appreciated!

Spring into action!

It's been a busy but brilliant couple of weeks since I last posted an update on here. The long Easter weekend was spent with Uncle's, Aunts, Cousins and grandparents as we descended on the London branch of the family. On Good Friday us men were left to fend for ourselves (and the kids) whilst the ladies took a well earned break and treated themselves to afternoon tea at the Savoy!

In typical male fashion, weeks of meticulous planning for the 'men and kids' day took place... okay so we spent 10 minutes deciding we can't decide what to do, jumped in the cars and 'winged it' ending up at a farm in Lee Valley which proved to be a great success.

Needless to say there were lots of animals which gave me the chance to do some much needed practice with Makaton signing – something I do struggle to use (and remember). I keep persevering but it really doesn't come that naturally to me if I'm honest. Bud knows far more than I do which is great testament to the time and effort Karen puts in with her.

She wasn't keen on any of the animals at first as she would point to them and shout, "No!" before turning her head in the opposite direction in a rather stroppy manner. It was funny to witness but I was mindful that I didn't want her to be in fear of them so kept her at distance until she felt more comfortable with the environment. It took a Grandad and an Uncle to convince her it was okay and before long she was feeding a pony some grass and stroking it's nose!

In less positive news Rosie has recently re-introduced her vicious face grabbing, hair pulling and general attacking of the face. Whilst it seems nobody is exempt from the wrath of the Bud, the majority of it is felt by Karen and Rosie's friends of similar age – especially 'Layna' who spends a lot of time with Rosie. They'll be playing together nicely then suddenly Rosie will grab her hair. Thankfully, 'Layna' doesn't make a fuss and will just wait for adult intervention then carry on playing. Karen received a swipe the other day which scratched the surface of her eye causing a lot of discomfort so we are having to be extra vigilant at the moment. I'd like to say it's a show of affection as we previously thought but it's obvious now by her face that she knows it is wrong, it's clearly a form of attention seeking but how to resolve it is giving us a few headaches (and Karen sore eyes!).

Jumping back to better news again...  For the past few weeks Rosie has been getting herself into a crawling position, holding it for a while then falling back to her bum. A couple of days ago she was in this position again and suddenly attempted to crawl which ended up being a kind of half crawl half bum shuffle – I really can't explain it very well so I've included a video below!

Then only yesterday to our amazement she crawled properly for the first time, again there is a video of her doing this below. She was very pleased with herself and rightly so – it's a wonderful achievement and one which we're all very proud of especially as we thought she would bypass this stage altogether.



New Crawl from The Future's Rosie on Vimeo.

Rosie's first crawl from The Future's Rosie on Vimeo.

Every little step...

Well I'm happy to say we've survived March again – without doubt THE most chaotic month of the year in our house. Thankfully all birthdays passed off without too much trouble other than the obvious dent in the the monthly budget – Down's Syndrome Awareness Week also kept us very busy and proved another huge success!

Unfortunately we've been less successful in encouraging Rosie to bond with 'C3PO' (her new walking aid). There's possible blame on our part due to having such little time to persevere, although the whole thing feels a bit too cumbersome for her to manage at the moment which isn't making it any easier. However...

....Rosie seems to have taken a whole new lease of life without C3PO! Whilst out on a family walk to one of our favourite places, Quarry Bank Mill, I took Rosie out of her pushchair, held both her hands and we walked together – it wasn't very fast and we took as much time as needed but she went further than she's ever gone before. Previously she'd been going maybe three or four steps before plonking herself back on her bottom!

The more we walk with her now the more co-ordinated she's getting with her legs, which is giving her more confidence. Her feet are also beginning to point more in the direction of five minutes to one, rather than a quarter to three! She's a long way off supporting herself but another breakthrough came yesterday when she walked across the living room floor with Karen holding just one hand! Will she be walking soon? I'm not so sure but watch this space... it's certainly looking more promising!

As many of you will know (and already be tired of hearing no-doubt) The Future's Rosie has been shortlisted in two categories for the 2014 MAD Blog Awards – 'Blog of the year' and 'Best Writer'. Thank you so much for those of you that nominated and for everyone who show's their continued support it means a great deal to me. Blog of the year is a judged category but Best Writer is up for public vote, which is where I need your help (again!)...

I find canvassing for votes very difficult as I worry it gives the impression I'm trying to pat myself on the back which couldn't be further from the truth. To win would be a marvellous honour, yes, BUT more importantly would help the blog reach a wider audience.

Last year it was fortunate enough to win 'Best New Blog' which in turn raised the profile and gave me opportunities to share the word via articles on BBC News and National Press. The blog now reaches more people as a result and I believe that an increasing amount of new parents have stumbled upon it whilst searching online – some finding it a help in the early, delicate days of trying to 'come to terms'  with a diagnosis of Down's syndrome with their child.

If you would like to vote for 'The Future's Rosie' as 'Best Writer' you can do so by clicking the link below, anyone can vote so if you wanted to ask your friends too I won't be offended ;)

http://www.the-mads.com/vote/

Bud turns three

As you may remember from last year March is a truly crazy month in our household with all three of our children celebrating birthdays!

Rosie turned three this weekend and we celebrated at home with family and friends, all of whom have been an invaluable support to Karen and I since the very beginning of our journey – a journey that is rapidly teaching us how Down's syndrome really is nothing to be afraid of – something we may not have believed in those early days.

The party for Rosie was brilliant, we had thought it just a small gathering until we realised there were 18 children running riot, which in a modest house like ours is quite some achievement. My heartfelt apologies go out to our very understanding neighbours!

Prior to Bud's party we attended a fundraising do for our local support group called 'Party on Down's' – organised by parent members who put an incredible amount of effort into making it a huge success. I was left gobsmacked by the number of people in attendance from parent members to general public. At the time of writing I believe in excess of £4300 has been raised! I'd like to extend a thanks to everyone involved for such a great event, Rosie had so much fun 'bum-shuffle dancing' and generally getting in everyones way!

The kids' birthdays usually make me stop and think how quickly they are growing up, however this year in Rosie's case, I actually find it incredible she's only turned three, It's like we've had her with us forever. It's difficult for me to remember a life without her – I don't mean to imply it was better before, quite the opposite in-fact. Rosie has enriched all of our lives in such a positive way.

It's also difficult to comprehend she's only three when I consider everything she's already been through. I know I've written this before but Rosie has endured and come through more in her early life than I've ever had to in the erm 30 (cough) something years of my own – that is why she's more than just a daughter she's also my hero too.

At the same time as looking back I'm looking to the future and whilst some thoughts fill me with fear there are plenty more that give me good reason to be excited and hopeful. As I scribble down this post I'm sat on a train to London where I'll be attending a private viewing of 'The Reveal' by 'Heart & Sold'. It promises to be an exciting exhibition of artworks by a collection of extremely diverse and talented artists – all who happen to have Down's syndrome (DS). A fantastic example of the potential people with DS can achieve given the same chance, respect and attention as their peers.

I'm now writing whilst sat on the train on the way back…

The exhibition was, as promised crammed full of exceptional work and left me stunned by the superb quality of art on display. I had the pleasure of meeting the director of Heart & Sold, Suzie Moffat who told me of the importance in choosing only artists that genuinely deserved to have their work exhibited, this is after all about seeing beyond the disability and recognising the raw talent. If you are in London this week and get chance please do visit the exhibition I promise you won't be disappointed. http://www.heartandsold.org.uk

Whilst in London I was also honoured to attend a Parliamentary Reception in the House of Commons hosted by Dr Hywel Francis MP and the Down's Syndrome Association (DSA). The reception was to highlight the need for Better Health Care for Adults with Down's syndrome and to launch the 'Adult Health Book', which I had the pleasure of designing. This is another vital step forward in helping improve the lives of people living with DS. I won't mention too much about the event as the DSA will be reporting it themselves in due course. I was particularly struck by Sara Pickard, the independent councillor for Pentyrch Community Council who has DS. She delivered a flawless speech emphasising (from first hand experience) the importance of providing better healthcare and more regular check-ups for adults with DS.

Contrary to what people may think I haven't met many adults with DS so seeing people like Sara doing her work so eloquently really fills me with confidence for Rosie's future. I could only dream of standing there in that environment and speaking so well. Sara closed her presentation by pointing out, "So Tuesday I'm delivering a speech in the House of Commons, London, then on Friday (World Down's Syndrome Day) I'll be presenting at the United Nations in New York!" If ever there was an example of the important roles people with DS can have in society... An amazing young lady who made me think the future's most definitely rosie!

More information about the DSA's Awareness Week topic of 'Better Health Care for Adults with Down's syndrome' can be found here http://www.downs-syndrome.org.uk/campaigns/awareness-week.html

Suzie Moffat, Director of Heart & Sold (centre at back) with the artists