Tuesday, 31 August 2010
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!
Monday, 30 August 2010
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?
Friday, 27 August 2010
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...
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....
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?
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...
Thursday, 26 August 2010
I have decided to set up a separate page for The Whizzy Wheel Fund so that anyone can access it and have a nosey and a read and, if they want to, donate some money to this wonderful cause.
I also intend to use the blog to let people know of events and ongoing sponsorship and to post photos of Eilidh and the equipment that we purchase for her.
All monies donated will go directly to a fund set up for Eilidh and accounts will be kept of all transactions for the account so that it is completely transparent for those donating.
The first piece of equipment that we intend to purchase is Eilidh's SnapDragon. This will enable her to become mobile and independent, allowing her to explore her environment, run over toes and drive like a crazy toddler! The cost of the Snappie is £19,908...
In the beginning
and baby Niamh was born.
and then followed baby Eilidh.
A happy family,
full of love,
A future bright and ever possible.
And then that changed:
the future was no longer quite as clear.
Life had changed beyond their comprehension.
What happened to bring about such a change?
On Thursday 27th May 2010 Eilidh, at 16 months old, after months of worry, was diagnosed with Spinal Muscular Atrophy Grade 2. A diagnosis which changed our family's perceived future and robbed us of hope. A diagnosis which means that Eilidh will be wheelchair dependent.
So the idea of Whizzy Wheels for Eilidh came to being and, in time, the realisation of the cost of Eilidh's independence and mobility became apparent... The Whizzy Wheel Fund was born as a result of this - a Fund to raise money to enable and empower Eilidh to be the best that she can be and to give us hope. Hope for Eilidh's future...