Joel raises money from his hospital bed

Fund Raising update No Comments »

A six-year-old patient at Birmingham Children’s Hospital has raised £735 for Children in Need by making his own Pudsey souvenirs.

To watch the story, please go to:

http://news.bbc.co.uk/1/hi/england/7729809.stm

Jordans November Update

Jordans Blog 3 Comments »

These pages are dedicated to all those kind people who still keep in contact and who continue to donate so generously.  Jordan’s documentary continues to be shown all over the world, more recently in America, Australia and Israel.

Special thanks

We cannot thank Ann Wilson (Amanda, the secretary’s mum!) enough for spending endless hours altering a pair of jeans for Jordan.  Jordan hadn’t worn jeans since he was a small child and was desperate to get some.  Now my sewing skills only just reach attaching a button so the jeans were totally out of my league.  Jordan loves the jeans!

Jordan’s Nan, Margaret Whitewood – for alterations to Jordan’s school uniform and for donating a further £93 from sale of hand made cards

New wheelchair

Jordan has some new wheels!  We wanted to get Jordan a more comfortable chair and one that could be used across rough terrain.  After some research on the Internet we came across a company called Fieldmaster.   We requested the demo DVD and literature and were so impressed that we asked for a home demonstration.  Jordan was hooked!  The gentleman from the company was very willing to make adaptations to the chair to meet Jordan’s needs, for example a tailored leg and footrest.  When we received the quote the cost was just short of £10,000 however the chair can be converted to a four-wheel drive to go over woods, mud, snow and even the beach!  We were extremely lucky to receive all the money needed from a charity called REACT.  Jordan loves his new wheelchair and we now have an adapted vehicle to take it in thanks to Motability and a porch to store it in thanks to PSF UK!

Jordan’s spine and legs

In the last newsletter I told you that Jordan was going to be admitted for tests under the case of a UK surgeon, Mr David Harrison at Royal National Orthopaedic Hospital (RNOH) in Stanmore.  This took place in May 2008 but in order to move forward the RNOH required two more tests, an MRI and a laryngoscopy.  The MRI was attempted with Jordan awake but he could not lie still for long enough and so an MRI under GA was arranged.  The MRI broke on the day and we had to wait for another appointment.  In the meantime, Jordan was admitted to the Royal Alexandra in Brighton for his laryngoscopy.  The anaesthetist would not put Jordan to sleep as it was too high risk and referred back to RNOH. In essence what they seem to be saying now, is that for any surgery, Jordan would need to have a tracheotomy done.   In the meantime the second MRI was booked and about an hour before we were due to leave another anaesthetist rang from that hospital to say she would not put Jordan to sleep either!  This sounds like a very bizarre tale but it gets worse because just as all this happened Mr Harrison went off requiring some minor surgery himself!  The registrar that we saw during the 3 days in May has now moved to another hospital and no one seems to know when Mr Harrison is coming back!! So basically another whole year has gone past and no progress at all.  What I forget to tell you was that in the middle of all this, Shriner’s hospital sent over all Jordan’s X-rays, MRI, CT scan results etc by FEDEX.  FEDEX lost the whole lot and the package was searched for and never found!  They would not even consider compensation for the impact on Jordan and the need for him to have further tests.

Well you really couldn’t make this up if you tried!  I am still trying to find out when Mr Harrison is returning to work.  We have to make a decision about how long we wait for him to return, otherwise its off to locate yet another spinal surgeon!

Jordan’s legs really are hurting him now and he cannot walk more than a few steps.  He doesn’t seem in any hurry to make a decision about his legs for now and I have to respect that.

Golf

Jordan’s most recent hobby is golf!  Demelza hospice took Jordan for some lessons with an Ex Pro one Sunday.  Jordan has his own set of clubs now too.

Holiday in Cyprus

Thank you so much to the following people who made this very special holiday possible:

Steve Hiller
Arthur and Margaret Dunham
Mary Collier and Joanne Queenin
Parkfield Archers
Margaret (Peg) Whitewood

We had a two-week holiday in the sun in a villa with its own pool.  It was glorious and we had such a great time.  It took some organising, as we had to get Jordan a business class seat, we had to fly to a different airport because of this.  We couldn’t take the electric wheelchair as I couldn’t find a car hire company with wheelchair accessible vehicles (only by the day with a driver) and we had to limit our luggage, as we had to fit all of us and the manual wheelchair in to a Vauxhall Zafira! Sardines comes to mind especially when Jordan takes up the entire backseat with his long and unbending legs!

Award for achievement at Bexhill High School

Jordan is doing really well at school and was recently presented with an award

He is starting a couple of GCSEs early and is currently interested in a career in architecture.

Camping

We took the boys camping in the summer.  Dean decided to buy a large tent that enables Jordan to stand up right (as he can’t go on all fours).  Well there’s big and BIG!  Dean bought a ten-man tent that said it needed only two adults to put it up.  What they didn’t account for is quite a windy day and two impatient boys!  Some fellow campers took pity on us and eventually the tent was up. The boys really enjoyed it and we hope to get some family and friends to join us next time.



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