Snappie - one year on

Snappie the Snapdragon came into our lives a little over a year ago; she has not solved all of our problems - far from it! - but, with time, she has brought fun to our family (just as Dan from Dragonmobility promised). Snappie is most definitely a girl: temperamental, bolshie and really quite gallus - perhaps she has inherited this characteristics from her proud owner? Snappie is fast and can turn on a tuppence; she even does wheelspins!  She's travelled through parks and fields, seen the sights at museums and now ventures to nursery.  She's been clarty, mankie and pretty maukit too.  I think that Snappie thrives on thrills and excitement  - a bit like Eilidh! 

extreme flowery makeover

april '12

With Snappie we have come far in the last year from a point of hatred  (yes, I would put it that strongly!) to one of acceptance - well kind of!  We have said goodbye to the buggy and moved on to independence through the wee Micro first then to Snappie.  From her first moves, to becoming more confident, to now playing "tig!" with Niamh, Eilidh is blossoming. 

Eilidh loves Snappie - that much is evident as her eyes light up at the mention of heading out with her - and loves the independence that she has gained from having a friend like Snappie.  Eilidh's love is contagious, she is teaching us about life with Snappie; she is breaking down walls and leading the way in her own definite and distinguished way.

So once again, thank you to everyone who made this possible through The Whizzy Wheel Fund and thank you to all at Dragonmobility who made and continue to make this possible. 

We, as a family, can now look forward to many, many more Snappie adventures. 

And here's the latest instalment in the Snappie tale:

Eilidh's Moves!

I am so, so sorry that I haven't posted in ages, but here is a world exclusive! (well, not quite!)

After some "peep-peep"ing

and

"up.... down"ing

and

lots of

roundandroundandroundandround

and with some tantalising and teasing with marshmallows...

Eilidh finally moves with purpose and direction...

Check her out!

We are so very proud of her...

Thank you once again to everyone who has made this possible:

We are forever endebted to your kindness and generosity.

Growing and growing...

Eilidh is growing like a beanstalk...
Taller and taller and taller...

She has nearly outgrown her Panthera Micro so it's time to talk self-propelling wheelchairs again...

We are due to see our lovely OT at our local Wheelchair services...
shame that they cannot offer Eilidh a suitable chair!
And pick up Snappie from DragonMobility
And see our favourite GBL Wheelchairs Rep too...

All in the space of 4 days:
23rd-26th
What a busy March!
And all to maintain our little girls independence which I value so greatly and hold close to my heart!
And it is so, so very worth it...

We have a date!

We have a date to go down to DragonMobility...

Whooopeeeeeeee!

Friday the 25th March...
Cambridge here we come...

Snappie is almost ready!


Thank you!
Thank you!
Thank you!

Tears of Joy

In all the commotion I haven't told you about Tuesday...

What a momentous day!

Eilidh's Panthera Micro arrived...

What a beautiful moment...

She knew what it was as soon as she saw Stewart from GBL Wheelchairs

and after some initial hesitation we put her in the chair and

whoooosh!

She was off...

For the first time in Eilidh's life she moved towards me, independently and under her own steam, to give me a hug...

I cried huge tears of sadness, but they were tears of happiness and joy too as Eilidh took her "first steps" to independence.  And I can tell you, mine were not the only tears shed that morning...

And since then...

Crikey, there's no stopping her!

She's turning circles, going backwards, negotiating doors, tormenting her sister, raking in bins, pulling out books from the bookcase, touching sockets, getting burnt on radiators, eating chalk... you know... all the stuff toddlers do naturally, the stuff that teaches them about their environment... and the naughtiness and intrigue that they do everything with amazes me ... and now EIlidh can have some wheeler fun too!

Joy.

Deep joy.

And you know what?  And this surprises me.  I still only see Eilidh and her smile. Just Eilidh. No chair. Eilidh is just Eilidh, but perhaps she's a little happier now too: she's finally independent.

 

I promise to post photos and perhaps a video link soon.

Raising Money

It's difficult for us to do this,

to ask for money to help our daughter gain the independence that she deserves,

but that is what we find ourselves doing.

We did not ask for this to happen to Eilidh.

We can not make her better

but we can, hopefully, give her all the opportunities that we can.

But we need your help...

The NHS will not supply Eilidh with a powered chair until she is 3.

And yet a toddler of her age is already mobile and naturally inquisitive, learning as they toddle and fall.

Eilidh needs that opportunity, the opportunity to be mobile and independent.

She deserves that opportunity.

The chair that we have chosen to pursue for Eilidh is the SnapDragon which will give her the best start in life.  Unlike the chair that the NHS may provide when she is 3, this chair lowers to ground level and raises too, allowing her to play on the floor with friends and hold hands with mummy and daddy when out for a walk.  As well as providing psychosocial benefits, the Snappie also comes with a standing frame option which has physical benefits for Eilidh too, for example, increasing bone density.  The SnapDragon far outclasses anything that the NHS can provide at this time.

test driving!

But this innovative chair comes at a price

£19, 908

and we need to raise that money.

Currently Eilidh is on a waiting list...

if we raise this money before the end of November she will hold her place on the list and her Snappie may well be ready by February...

if we don't raise it by then, she will wait until the money is raised and Snappie will come approximately 8-12 weeks after...

And after the chair... well, there will be more powered chairs and powered trikes and devices and gadgets to give her the best life possible...

But, first things first, let's start with the most important, the life-changing Snappie...

So please, help us fund raise for Eilidh.



forward and back, forward and back



Panthera Time

News Flash!

The Panthera has arrived in the UK
and we may get it as early as Tuesday...

We are so, so, so very excited!

Baby Steps to Independence

Whoooopeeee!

The decison has been made.

And I'm sure that it is the right one for Eilidh and for our family.

No waiting for the NHS and paperwork to be completed and endless waiting lists...

50% deposit on the Panthera Micro paid.  Job done!

I have been pro-active and it feels good!

Now we just have to wait and see how long it will be until it arrives...

Patience, Sheonad, Patience!

The Lion Cub

A lovely lady came today from Albion Mobility with the Zippie Simba.

Immediately I was struck by the size of the chair, although momentarily distracted by the lovely colourful jungle animals on the spoke guard... a giraffe, a zebra, a monkey, a hippo... but I digress!  The Simba is much taller, bulkier and not so toddler sized compared with the Panthera.  Eilidh sat higher off the ground and didn't look quite as comfortable but was still able to move the chair which was great as it is approximately 4kg heavier than the Panthera Micra.  She was able to put the brakes on and off and on and off again... and Bella-Bear had another free ride too.

Another youth chair was also suggested.  Allowing for growth in width and seat depth, the TiLite YG is another lightweight contender.

So today was certainly another positive experience.  I talked with the Albion rep about mobility and independence in such young children in the UK and she again confirmed that Eilidh would be offered a buggy but that I could push for a manual wheelchair if I thought that it was in her best interest.  She confirmed that the Panthera Micra would not be available through the NHS.  We talked about funding and wheelchair services in the NHS and how there appears to be a huge discrepancy between who should probably get a chair and who actually does.  I am now beginning to understand that wheelchair services should, ideally,  be removed from under NHS remit and given an overhaul - in time, perhaps, in time.

The Panthera...

what a lovely day...

heart-breaking too though as I saw Eilidh in a wheelchair...

independent in a wheelchair, mind you!

A rep from GBL Wheelchairs arrived this morning with this dinky little chair and, after quickly assembling it - and it literally was a two second job of putting the wheels on - I went with Eilidh through to the kitchen... without the rep as Eilidh certainly had a wee touch of stage fright!

I strapped her in and added the wide neoprene band which we used as additional truncal support, adding in Bella-Bear too for company.  Within seconds she was moving the chair with one hand, then two and then, gaining momentum, she pointed outdoors; she was off!  After much waiting, and some heart-break too, here were Eilidh's first "steps"... what an amazing moment!  There is hope, so much hope where a few months ago there was none,  for Eilidh's independence... And what a proud mummy I was too...

D was unable to join us today and so tonight, with the girls tucked up in bed, I showed him short video clips of this momentous day.  He was moved and quite rightly - sadness that our child is wheelchair dependent but happiness because, finally she had gained a little independence and she was so happy and proud of herself...

I found out today that Eilidh may be able to get a Zippie Simba through the NHS.  After a test drive of this chair tomorrow I'll try to find out how quickly we can be seen at WestMARC so that we can make a decision as to how long we can wait until we get Eilidh the chair which will, to some extent, change her life!  And then the toddler or "wheeler" fun will begin...  Watch out everyone, Eilidh is on the move!

Independence

I am so very keen that Eilidh becomes independent as quickly as possible so that you can explore her world and the beautiful world that she lives in.  I am keen for her not to develop learned helplessness.  I am keen to give her as many opportunities as possible.

Over the last few weeks I have been exploring the possibility of a manual chair for Eilidh.  As far as I can gather these are not frequently used in the UK, but are in America and especially in Scandinavia.  Eilidh has reasonable upper body strength and good truncal control at present and I can see no reason why she should not be able to use one.  Eilidh's physio has no experience of little ones in manual chairs and thinks that our local Rehab and Mobility Centre will provide us with a buggy only.  I am sure why this is the case and suggest that it may be that many disabled children under 2 will be cognitively impaired and therefore unable to self-propel themselves.  Unfortunately, to date, I have been unable to discuss this with a clinician at the centre.

Instead I have been in contact with other families on SMAspace who are using manual chairs and there has been mixed responses, but two chairs have been suggested  which are incredibly lightweight and suitable for Eilidh

The Panthera Micro from a Swedish company Panthera

and the slightly heavier Zippie Simba from Sunrise.

The good news is that we have reps coming over the next two days with both chairs for us to try out.  I'll keep you posted as to how we get on.

Of course, we would need to fund this ourselves at another £1500... D wonders whether we should be paying for a chair while waiting to fund raise for the Snappie, but what price can we put on Eilidh's independence?

The SnapDragon Cometh...

Written on Thursday, August 19, 2010

Lou from Dragonmobility came today - one hour early and catching me a little off guard.  I welcomed her into my home and we talked about my family and life with SMA. Lou shared her family story and was so very open with us which I really welcomed and I instantly felt at ease with her. David arrived home and Eilidh woke up - she took some time to give Lou her first smile but she did smile - first hurdle over, Lou welcomed by Eilidh!

The sun was shining in Glasgow so we decided to go out into the Garden with Eilidh. D sat with Eilidh as I walked around the Snappie. I grinned; orange in colour with furry seats it reminded me of a Ford Cortina - all it needed was some furry dice! It was smaller than I thought, more compact. Not quite as finished perhaps as the Koala - not as cute and cuddly, but functional and precise. I could already see Eilidh sitting in this and becoming independent and enjoying life. (If I am honest I think that I saw her in a Snapdragon from the moment I saw pictures of it and read about Dan, Lou, Ruth and Dragonmobility)

Bella-Bear took Snappie for a spin as Eilidh watched with intrigue and caution. We took the chair off and looked at the standing frame, taking this opportunity to put Eilidh in the seat on the grass with her toys. She became less suspicious and more comfortable: in time we were able to put the chair back on the chassis and let her get used to being on it at grass level.

ready to go!

The beauty of the Snapdragon is just that - it can go from ground level to standing level with the touch of a button - green to the grass below and yellow to the sun above. Red for "peep-peep" which of course brought a smile to Eilidh's face and, in turn to ours too. And then she was off around the garden with daddy at the controls... both slightly apprehensive to start with (and I'm not surprised knowing what D's driving is like!) but they quickly gathered confidence. I too was keen to have a go and I did - I just hope that it felt as liberating for Eilidh as it did for me.

i'm not sure about this, mummy...

 

So back for more tea and biscuits and down to the nitty-gritty about the business, servicing and costs.. Lou continued to endear us, not just to the Snapdragon but to her, her passion and the company's ethos. She talked with such grace that I could not help but like her.

We said our goodbyes, hoping that we would see Lou again, but knowing that we would. D and I need to talk more about our thoughts with regards to the chairs - we need to do what is best for Eilidh AND we need to look for funding... I wonder what colour we will order...

DragonMobility

Very quickly after Eilidh's diagnosis we came to realise how important her mobility and independence would be.  The realisation that she would require a powered chair did, in all honestly, take more getting used to than the thought of a self-propelled chair.  I think that I probably deemed her more dependent, more disabled even, by needing a powered chair and that, if I felt this way others surely would too.

I'm not really sure how I found my way to Dragonmobility, but am glad that I did...

Dragonmobility is a small, family run company set up by Dan and Lou based in Cambridge. Dan and Lou's daughter Ruth was diagnosed with SMA in 1981. Realising that Ruth would need to be independently mobile to live as normal a life as possible, the yellow peril was born - a powered chair which could amazingly move from floor to highchair height. Ruth was independent at the age of 22 months....

WOW!

pretty gobsmacking really, but totally inspirational...

We quickly arranged for a demonstration and Lou came to visit us on 19th August with a SnapDragon.  We already loved the idea of a Snappie and could imagine Eilidh whizzing around in her own chair, but it was a daunting thought too - she's 18 months at the moment and we probably won't get a chair until she's nearer to 2 - we have to apply for funding, fundraise and then order and wait...

but that's not what is daunting...

yes, the magnitude of finding funding is huge...

yes, the waiting will be difficult as we yearn to see Eilidh independently mobile for the first time...

what is daunting is this - seriously, can you imagine a 2 year old in charge of a 113kg powered chair which can speed along at speedy speeds - it's incomprehensible...

but the thought does make me smile too...

my crazy little girl, independently mobile, with Niamh standing on the chassis, tagging along for a free ride... whizzing round and round and round in circles...

and the obligatory "pimping" of the chair.. fairy wings perhaps?

in-com-pre-hen-si-ble!

Then there is the realisation that our Eilidh is going to be wheelchair dependent: I pray that seeing Eilidh in the chair, seeing the excitement as she gains her independence, will more than compensate for this sadness I feel right now... I have to hold on to that mad and mental image of my girls on the Snappie, enjoying life to the full; me standing watching, with D at my side, smiling a huge happy smile as we are a happily mobile family...