August 20, 2005

I don't know what to say. I am stunned by the love and generosity you have all shown to our chick. I don't know how to adequately express our gratitude. Just know that this is so very much appreciated.

Yesterday the chick and I opened an "Oliver's Fund" savings account into which to transfer funds from the PayPal account. That should happen toward the end of next week. Then I shall transfer the exact amounts for each item into my cheque account,and write a cheque to send to each supplier. The bank seemed to think this was the best,and most easily accountable,way to do things. Here's a pic of embarrassed bank employee setting up the savings account !
She was a good sport about it all !

A word about the trike. We didn't just pick the most expensive one we could find. I'm going to paste part of my reply to the kind,generous and thoughtful Elizabeth,explaining why the,admittedly cheaper,trike she found in the U.S. wasn't suitable :

" Things are never as simple as they seem,and Oliver is much more disabled than he looks.
We tried numerous trikes at Whizzkids,with their therapists giving advice. The things that bump up the Quest 88 price are the extras. He needs hip and thorasic supports to keep him upright and in a good position - lap & chest straps are not enough. He also requires calipers to maintain a good leg/knee/hip position,attached to footplates that stop his toes pointing down. A more sturdy,heavy trike is needed as his left side is so much stronger than his right. The Quest 88 trike is infinitely adjustable,down to how far to the left or right you can move the handlebars.
It is expensive,but it is the one best suited to Oliver,and the one he was most easily able to peddle - the proportions are all completely adjustable so that the correct distance from hip to peddle can be attained.
As I said,things are never simple ! "

The price for the basic trike is approx 650. It's all the add-ons,like the hip and thorasic supports that will keep Oliver sitting upright on the saddle,that bump the price up. I am able to claim exemption from V.A.T. [Value Added Tax] as I will be buying equipment for a named disabled child.
It will be so exciting for all of us to get the trike. Oliver does very little supported walking [we hold him around the shoulders and upper arms to take his weight,which is easier on our backs now that he's grown taller ! ],and has virtually stopped using his Kaye-walker [his has forearm supports and a pelvic band,that keeps him upright]. It was starting to be unsafe as he needed help to keep it upright and ended up walking with his legs amd torso on a slant,due to his right side being so much weaker than his left. He isn't able to stand or walk without someone or something holding him up,and even then it's hard. It's getting harder as he gets taller and heavier. As a result he gets very little cardio-vascular exercise. The trike will be so good for him physically. Even more so phsycologically,I think. Independant movement. Don't ever inderestimate it ! As Oliver can't crawl it isn't something he's had much experience of. It's very exciting !
Apparently the trike will take 3-4 weeks to arrive once it's been ordered. The charming sales engineer has said he'll pose for pics when he comes to check & adjust the ''fit''. He was very excited about this incredible knitting community,and even said he fancied learning to knit ! He may regret that ! ;-]

The plan is to aim for the electric wheelchair next ! We are going to Whizzkids next tuesday for a training session. I shall ask for a formal assesment and recommendation. Their therapists will then suggest a few chairs,make arrangements with the various companies for trials,then decide/advise which the best,most suitable chair for Oliver would be.
I'm sure the Occupational Therapist would rather we got the stair lift first as she has concerns for our safety. We're getting quotes this week,and seeing if rental is a possibility. I don't think it will be as a simple,straight lift track won't work for our steep and narrow stairs. We'd have to have a made to measure system with extra runs at the top and bottom of the stairs,so that we could get round the chair into a safe position to get Oliver out. We shall see. Anyway,the point is that I really want Oliver to have a chair that he can use outside. I feel that is more urgent a need.


A little knitting related something !
I've blocked my Kiri shawl/ette.It's really a shoulder shawl. I hope the recipient likes it. Just have to package it up and post it to the waiting Rowanette !
A close up.

Posted by emma at 12:12 AM | Comments (15)
August 18, 2005

What can I say ?
The current PayPal total is now enough,with the 500 pledged by the Olive and Norman Field Charity [Run by the Red Cross and covering what used to be the North Ridings of Yorkshire. They left their large house,in the 1930s,to be used to give disabled children holidays. In the '70s,when no-one wanted to use it anymore,it was sold and a charitable trust set up. ] to pay for the car seat !!!
This is fantastic and incredible.
I rang them,have to confirm in writing that the remaining funds have been raised,then they'll send a cheque.
Tomorrow the chick and I have a Dial a Ride trip into town booked - he loves the lift and ramp at the back of the bus ! We shall go to the bank and open a savings account for Oliver's Fund. It will take a few days for PayPal to verify it,then I will transfer funds over.
I hope this is alright with everyone. I may try and document it in pics ! Banks can be funny though.


A wonderful new e-bay auction has been set up by the most generous Kim,for a stunning lace scarf knitted from her gorgeous hand-dyed angora blend yarn. It is so beautiful. Everyone's generosity and love leaves me speechless.

Kerrie's two HipKnits yarn auctions are going well ! Thank you bidders.


Our last trip out was on Tuesday. We went to our local museum
[isn't that alium fountain gorgeous ?],found the craft area
and made a mosaic/collage fish.
Oliver didm't lose interest until we were almost done after 45 minutes. I call that a success. One day I shall have to tell you our Dial a Ride adventures. The chick is their youngest customer. I think the average age is about 80 ! Old biddy express. Most of them are lovely and coo at him. Some are not. The latest : "What do they call him ?". Apart from the fact that he's not a dog,to be ''called'',why not just ask him ?


I'm very slowly e-mailing everyone to say thank you. It may take a while !

Posted by emma at 10:52 PM | Comments (24)
August 17, 2005

Added on 18th August :

Thank you to Jean for this fantastic,perfect button !

p.s. I'm awash with e-mail. May take a while for to write to ever !

Pledge to Oliver's Fund!

Many thanks to Claudia for making this paypal button for us.
I'm lost for words. Thank you to everyone for your generosity.

Posted by emma at 02:31 PM | Comments (21)
August 16, 2005

Truly,I am. I'll write more later - it's the chick's bedtime soon,and we've had a busy mosaic fish making day. Well,we opted for more of a collage...

On the advice of a friend [K] I have created an account.
No idea how to do the button thing,so here's the account e-mail:

Edit : I should have clarified. This is the e-mail for the paypal account for Oliver.

Hard though it is,I can do this for Oliver. It does cause some angst.

*** The wonderful Kerrie has set up two auctions to raise funds for Oliver. This one for a kilo [!!!] of handpainted silk in the colour of your choice,and here for 500gms of cashmere sock yarn. ***
Words canot express my gratitude. Thank you so much Kerrie. Everyone. Thank you so very,very much.

Posted by emma at 07:13 PM | Comments (9)
I am somewhat embarrassed.

I wasn't touting for money when I wrote the last entry. Really. I was just,as Kay would say,telling it like it is ! Thank you so much for your kind and generous comments. I am,for the sake of our chick,going to accept offers of help with fund-raising,not least because I don't know where to start. I'm applying for charitable grants,but things aren't as easy as you'd think. Well,a lot more complicated anyway.
I'm just going to state it all baldly,despite my discomfort at doing so.
I seriously don't expect anyone to give us any money...unless they really want to.

We're trying to fund a number of things. The most pressing is a car seat. Oliver can't maintain an upright position without some support,and would submarine under the seatbelt. His current seat is too small and almost beyond use - I doubt that he's comfortable in it. The seat that we're trying to fund will fit until he's about 14. It has a swivel and slot action to make a transfer to his wheelchair easier. I'm no longer able to lift him out of the car,he's too tall and heavy,and Allan finds it difficult.
This car seat [Sorry,I can't get this link to work.Go to products,then transportation.It's the ''Panda" car seat.] costs a very scary 1,730. No. Really !
The Occupational therapist has written a great supportive letter. I've managed to raise 500 so far,which we'll get on condition that the remainder is raised by January 1st 2006. The charitable fund situation is pretty dire right now. A lot of charities means test,with the cut off point being 23,000 per annum as a rule [what's so magical about this figure ?].Those that don't means test are short of funds. Some have none available. Most are giving the Tsunami appeal as the reason. I would never criticise people for giving to these urgent and big appeals. I've given to Oxfam's Tsunami fund and,more recently,to the appeal for aid for Niger. They have left a lot of smaller charities strapped for cash. Just saying !
Our second item that I've been filling out forms for,with a supporting letter from Oliver's paediatrician,has been this adapted trike [actually the link shows a pic of the Colt trike,but you need to register to get all the info ]. We went to a Whizzkids trike day,to see what was available. This trike has hip and trunk supports and calipers attached to the peddles,to keep feet and legs in a good position. The gears are such that give maximum result for minimum effort. Oliver was able to enjoy his first truly independant movement,apart from a few feet of wobbly bum shuffling [he tends to keel over] and some very slow free wheeling,one handed,in his wheelchair. He went round the carpark five times,with Allan using a steering bar to prevent crashes. His face was a picture of pleasure and delight in his new found skill. It would be great cardio-vascular exercise for him,and us,keeping up with him.
The cost ? 864 ! Are you starting to get an idea of the enormity of it all ? The reason I can't sleep.
Electric wheelchairs. Now there's a tale. I'll attempt the abridged version.
We were invited to wheelchair services after Oliver's paediatrician and physiotherapist both recommended an electric wheelchair. The consultant has a reputation for not giving out electric wheelchairs to children under 11. He can't use age as a reason as that's discriminatory and against government guidlines. Oliver was put in a chair,for the first time ever,shown the controls and exactly five minutes later given a test ! He had to negotiate an obstacle course of chairs. He managed two circuits,then on the third caught a chair leg. He thought it very funny that he'd ''crashed''. He's five years old. The consultant pronounced him unsafe !!!
We've been driving for an hour up to Newcastle every couple of weeks for an hours wheelchair training at Whizzkids. The have never been able to see a problem and think he's more than capable of managing an electric chair.
Even if he passes his next test [we're waiting for an appointment] the N.H.S will only issue him with an indoor chair for the first year or so. What's the point of that ? I feel that they're quite evil. Really,I do. I could easily have thumped the charmless Dr.B. Not that I ever would !
Whizzkids are going to do a proper assessment and recommend the best chair for Oliver. They fund chairs. Their waiting list is 18 months,and there is 'some' means testing.
Electric wheelchairs [this is similar to the one Oliver is training in] start at around 4,000. There's a new ''off-road'' style of chair that would cope with the beach [have you ever tried pushing a wheelchair on sand ?].It has a remote so you can cut the engine if the driver is being foolhardy !!! It costs 7.000'ish.

So,there's most of the bare bones of it,laid out for all to see. I fill in the forms. It's been a revelation. When I tallied up all income versus outgoings I discovered that we had 21 a month ''spare'' ! That explains a lot. If I gave up all yarn purchasing,my one indulgence,it would take over 20 years to save for all that and the chair lift. Ah yes,the 4,000 chairlift we need because I'm starting to struggle carrying the chick up and down the stairs. The chair lift that social services would provide if we lived in Scotland,Wales or Northern Ireland,but is means tested for,on income alone,in England. We're about to attempt to release some equity on our home to fund that.
A nightmare really. It does feel better to have a moan about it,and explains why I'm a touch distracted these days.
I'm still in two minds about posting this. It reads like a pathetic begging letter,which it isn't. I just don't think people realise what's involved in dealing with physical disability.
Having said all of that,we adore our chick. I know that there are people all over the world who are truly suffering,and we have a very good life really.

Posted by emma at 12:20 AM | Comments (21)