Charlotte Robinson

Lately...

2007-09-19T08:46:00.000-07:00

Firstly we'd like to say a massive thank you to Caz and Lorraine for raising money for Charlotte's trust. Caz ran the half-marathon in London and raised a whopping £400 and Lorraine (far left in the picture above) ran the Glasgow 10K and raised an amazing £180!! And made a rather dashing t-shirt to show her support to the trust!Thank you both so much!!

Charlotte is doing brilliantly. She has started to have her schooling online on a programme called Accipio which is a virtual classroom where she can hear and talk to her teachers and other students.She is doing 5 GCSE's, PWL (preparation for working life), ICT, English, Maths and Science. She will go into school for half days on Fridays so she isnt missing out on the social side of school- although her friends are round every day so there's no chance of that :)

Charlotte participating in an internet lesson;

Thanks again for everyone's on-going support

xXx

Chiswick Moran Fundraiser Photos

2007-07-16T13:14:00.000-07:00

We had a fantastic nite on the 14th! Raising a phenomenal £21,000!!! Here are a few phots from the evening, I will post a link to the rest of our photos over the next week or so! Enjoy!

Fundraiser this coming Sat - 14th July 07

2007-07-11T08:01:00.001-07:00

Hey to all of you coming to the Chiswick fundraiser for Charlotte at the Moran Hotel this coming Saturday!

The event kicks off from 7pm and directions to the venue can be found at:

http://www.chiswickmoranhotel.com/location.htm

Rugger in Marbella

2007-07-09T07:34:00.000-07:00

2007-07-09T07:28:00.000-07:00

We all wanted to say a big thankyou to Lesley Ann for the success of her Purple Butterfly Walk in the North East. Lesley and team raised over £1,000 for Charlotte's Trust and although the weather wasn't great assured me they had enjoyed it! Special mention for little Neave who is only 3yrs old and managed the 10 mile walk unaided!

Canal Barge Trip

2007-05-21T02:19:00.000-07:00

We've just spent the weekend careering off banks along the River in Harlow with Charlotte at the helm of an 86 ft Canal barge! Check out the snaps!

Skydiving film

2007-05-14T00:55:00.000-07:00

The following link is a film made my Chris and his Dad of the skydiving event that took place in Feb 07. There is some fantastic footage of Charlotte walking! Thanks again to all who took part - just waiting for the sponsorship money to arrive now!!!

http://video.google.co.uk/videoplay?docid=4226060660289677555&q=Charlotte+Robinson

14th July 2007 - Chiswick Moran Fundraiser

2007-05-09T01:45:00.000-07:00

Back to school...........

2007-05-08T12:19:00.000-07:00

Charlotte starts school again

2007-04-30T15:14:00.000-07:00

Check this young lady out.... charlotte started school last week, three afternoons a week to start, Brentford school for girls have been brilliant, she now needs to get down to seriously concentrate on getting enough GCSE's to qualify for A levels.

Charlotte has two operations to cope with in the next few months as well as a kidney transplant, hopefully from her dad, if all the tests continue to work out. This will give her the energy and strength she needs to build up her stamina. Charlotte is walking for at least half an hour a day and is doing really well.

Sisco, her constant companion and partner in crime is pictured climbing in my plants........

HUGE CHISWICK FUNDRAISER

2007-04-10T10:39:00.000-07:00

The Chiswick Moran Hotel have kindly donated to us the use of their Napa Restaurant on Saturday 14th July 2007 for a big fundraising event!!

Check out the venue at:

http://www.chiswickhotellondon.co.uk/Chiswick_Moran_Hotel_Home.html

The line-up for the evening will include: live bands, auction, raffle and buffet!!

Tickets will be £15 a head and we are strictly limited to 100 people for the nite!
Please contact rachel@charlotterobinson.org for tickets!

Talking to Charlotte........

2007-04-06T06:17:00.000-07:00

If you fancy e-mailing Charlotte direct pls use charlotte@charlotterobinson.org

Check Pip out!

2007-04-05T04:47:00.000-07:00

Well done to Pip for finishing the Reading Half Marathon - for anybody wishing to see snaps of Pip in action please click on the following link, select Reading Half Marathon and add Bib number 9738.

http://www.marathon-photos.com/index.html

Summer parties :)

2007-03-27T14:50:00.000-07:00

We are organising a big party for Charlotte on the 29th May 2007 at a venue in Chiswick (to be confirmed) and would like as many people as possible to join us!!!

Will keep you posted as we organise more details! Rachel x

Murder Mystery.............

2007-03-27T14:46:00.000-07:00

Just keeping you all up to speed with Charlotte's progress, the photo above is from a Murder Mystery party we had at the weekend. Charlotte was playing Major Ivor Titcher - I think the humourous name was lost on her! Great outfit thou!!!!

Congrats to the skydivers.........

2007-03-18T14:10:00.000-07:00

We had a fantastic day at Weston on the Green, Oxfordshire on the 10th March 2007 watching the crew doing a skydive!! Huge thanks to Piers, Jenny Vige, Karen & Mark and Chris D's team from Sungard Vivista.

Jenny and Charlotte above :)

Check out the superstar walking..............

2007-03-18T14:04:00.000-07:00

Thanks to the skydivers.........

2007-03-15T03:38:00.000-07:00

It was a busy weekend for fundraising last week! We had a great day down at RAF Weston on the Green with the 'jumpers'!! Big thanks to Piers, Jenny V, Karen, Mark, Chris D and his team! We will post some photos as soon as I have them :)

The day was made extra special with Charlotte up and walking around for most of it :)

Well done Steph & Jo

2007-03-15T03:36:00.000-07:00

We all wanted to say a big thanks to Steph & Jo for running the Hampshire half marathon last weekend - I was knackered watching you both!!!

Check out Steph in action :)

http://www.dephotos.co.uk/emAlbum/cgi-bin/pro/emAlbum.cgi?c=show_image;p=Running/Fleet%20Half%20Marathon/2007/0100-0999;i=348

The little superstar........

2007-03-09T07:43:00.000-08:00

I've been trying to upload photos of Charlotte walking to this blog all week and for some reason the site just isn't working properly! I have raised a support call with the blog people today - so hopefully we can remedy it next week!!!!

I went to see Charlotte walking at Roehampton today and she is just incredible! She walks effortlessly with no signs whatsoever of having prosthetics - apart from the fact she has had funky coloured designs done on them and is very keen to hike up her trouser legs to show them off!!

It was a strange feeling seeing her walk today, almost like the last 9 mts hasn't happened and in equal force an incredibly emotional feeling knowing that it has and she has taken it in her stride and got on with life! I honestly don't think I have ever been prouder of anybody!

Well done Rugger!!!

Rach xxxxxxxxxx

Pigeon sale raises a whopping £6,775.00

2007-02-27T02:35:00.000-08:00

Morning everybody!

I've just been talking with Vince Sheedy, a chap who read Charlotte's story in the Hounslow Gazette when she first got sick.

Behind the scenes for the past 6 mts + Vince has been organising a pigeon sale with all funds to be donated to Charlotte's trust.

The sale has raised an amazing £6,775.00

We just wanted to extend our thanks, it has touched all of our hearts that somebody who was previously unknown to us has spent so much time and effort assisting with fundraising for Charlotte.

Many thanks - Rachel, Jayne & Charlotte x

Thankyou to 'Mothers & Others' in Barnet

2007-02-23T08:40:00.000-08:00

Having just received a telephone call from Joey @ Mothers & Others in Barnet I wanted to extend my thanks on behalf of Charlotte and the Charlotte Robinson Trust.

Joey knows one of the nurses at Great Ormond Street who looked after Charlotte and was touched by Charlotte's story and wanted to do a fundraiser to help out. Joey organised a toy sale on the 23rd January 2007 at Mothers & Others and raised £120.00.

Many thanks for your support - Rachel, Jayne & Charlotte.

Charlotte walked.............

2007-02-20T00:22:00.000-08:00

for the first time in 9 months yesterday at Roehampton with the aid of prosthetic legs!!!!!!

She is making an awesome recovery - we are all incredibly proud of her!! I'm going to attempt to film her walking and upload it to the blog site later this week!!

Rach x

Charlotte's Charity Night

2007-02-15T07:45:00.000-08:00

We've been a bit slack updating everyone on events for the past couple of months, with having Charlotte home she has taken up a lot of our time.

Charlotte's dad, Joe sent a CD through with a bunch of photos from a fundraising event he did back on the 3rd November 2006 - so apologies about the date order but we wanted to keep people posted on all of the events.

Party - 29th May 2007

2007-02-12T01:17:00.000-08:00

We are having a party/fundraiser for Charlotte on the 29th May 2007 in Chiswick, West London!

We are still trying to locate a suitable venue as we'd like to invite Charlotte's friends and lots of adults! Well over 18's - not sure the term adult applies to most of my mates :)

Any ideas for venues/things to do etc please email rachel@charlotterobinson.org

Will keep you all posted with more info as soon as we have it

Rach

Purple Butterfly Walk

2007-02-12T00:54:00.000-08:00

Morning all!

We've just received an email from Lesley (Charlotte's dad's girlfriend) who has organised a sponsored walk along the cliffs of Sunderland to Lizards point and then back (8 miles in total). The walk is taking place on the 29th March 2007.

Anyone wanting to join the group or sponsor Lesley please contact her directly on 07837 407220.

Many thanks - Rachel

Fleet - Half Marathon

2007-01-30T03:27:00.000-08:00

Steph Dennis (family friend) is doing the Hampshire half marathon for Charlotte on the 11th March 2007 in Fleet, Hampshire.

Could any people interested in sponsoring her please drop her an email to stephanie.dennis@uk.zurich.com.

Many thanks - Rachel

Skydive on the 10th March 2007

2007-01-30T02:38:00.000-08:00

The rescheduled skydive for the massses has been re-booked for the 10th March 2007 at the same location as last time, Bicester, Oxforshire! We raised a whopping £3k last time, would be great to raise as much again!

Anybody wanting to join the jump team please speak to Chris Dobbie who is organising the event on 07841 259213

Half Marathon in Reading

2007-01-29T02:41:00.000-08:00

We've just heard that Pip (friend of the family) is doing a half marathon in Reading, Berkshire on 25th March 2007 and is hoping for sponsorship from as many people as possible!

I'll update with more info as soon as we have it: meanwhile anyone wanting to sponsor Pip please email her at pipw@thebfa.org or call her on 07747 066195.

For more info: http://www.asicsreadinghalfmarathon.co.uk/

Congrats to Pip who has raised over £1000 in sponsorship money so far!!!!!!!!!!

Rogue 'Charity Collectors'

2007-01-29T01:00:00.000-08:00

Morning all!

Apologies for not getting a post up any sooner, its been mayhem since Rugger's return home just before Christmas! Jayne assures me that she will be getting an update post up and some photos during the course of this week.

I had a flurry of emails and telephone calls to my office yesterday from Haringey residents who have been duped by two girls supposedly collecing on behalf of Charlotte's Trust.

The girls in question are: one white with brown hair pulled up, estimated age 16 and the other black, wearing trainers and about 20 years old. Their 'technique' is to knock on peoples doors handing out flyers about Charlotte and then ask for donations with a 'story' that myself and Jayne will be dispatching T-Shirts to people who donate, hence the need to collect a home address from people who donate!

The three complaints I have have are North London based: Crouch End, Wood Green & Tottenham.

Collecting on the street for a Trust Fund IS illegal and we have never endorsed this behaviour on behalf of the Trust.

Could I please ask that whoever is insensitive, cold hearted and stupid enough to do this ,that they stop effective immediate! I and Jayne are now having to waste time today making statements to the Police when really we have much better things to do i.e looking after Charlotte!!!!!!!!!!!!!!!!!!!!

Suprise Birthday Party

2006-11-30T15:50:00.000-08:00

Charlotte's birthday is the 8th December, she has a lot planned that day with her family and these plans change daily!!!!
The hospital have been amazing, the adolescent unit are offering their premises some staff and all of their craft materials, On the 7Th December from 6pm to 9pm you can decorate anything you like and give it to Charlotte for her birthday (or you can keep it) If you have a plain T shirt that works well.
Sky ward are donating a cake and there will be soft drinks etc.
For those of Charlotte's age there is a snooker table and a karaoke machine!!!

CHARLOTTE KNOWS NOTHING OF THIS, PLEASE DON'T TELL HER

Please bring some kind of food or drink, no alcohol.... We will order Pizzas when everyone gets there and we have an idea of how many we need.
She thinks she is meeting Lois and the PICU crew, which hopefully she will be.

Everyone is welcome if you can, post who's coming so we have some idea of the numbers that would be great and pass the word around so people who don't necessarily check the blog get to know.
I look forward to seeing her face when we suprise her

Skydive update

2006-11-30T11:53:00.000-08:00

Roger Ross and Alan went ahead with the skydive a couple of weeks ago, but the rest of the crew got caught out with bad weather and have to re schedule for next feb, so anyone who felt as if they missed out before has lots of time to get the sponsership money.

If you are hesitant follow the link to the video, Roger really looks as if he is having a great time. http://video.google.co.uk/videoplay?docid=-7798864864660462221

Lemar

2006-11-30T11:41:00.000-08:00

Yes it's Lamar!! and he is more buff in real life, he spent about half an hour with charlotte and they were very taken with each other, lamar said he would put a link on his web site to charlotte's, I haven't found his yet to check anyone who finds it please send the link.

Operation over

2006-11-23T06:46:00.000-08:00

Charlotte has had a very busy week, she went 10 days without dialysis, we were all set to believe the miracle we were waiting for had happened, her kidneys have recovered, but not enough............
We had the devastating news that she will need a kidney transplant, it could be in 15 yrs time, it could be in 6 months, but she will need it. Joe, Sophie and myself are looking at profiling to be donors.
We have been out and about, shopping in covent garden and the British museum with Sach and Darrel, lots and lots of charlottes freinds have visited, at one stage there were 5 extra bodies on her bed, the sister didn't see.
The operation today went well, Charlotte lost some more of her hand as the bone was dead underneath, the skin is very fagile and the blood supply is poor so we have to hope and pray for the best. There was a rogue bit of bone removed from her thumb and some black sponge from the vac dressing taken from her palm.
All tubes (nearly) have now been removed which will give charlotte the chance to get rid of her bugs once and for all, so she will be able to mix with other patients and used shared spaces

Haircut and Makeover

2006-11-12T20:21:00.000-08:00

Jude gave charlotte a makeover today before we all headed off to the IMAX theatre to see the polar express. As you can see, Jude did a brilliant job, Charlotte is getting so much better. We met a couple of friends there and all stuffed ourselves with popcorn and chocolate.
A double sheepskin has made all the difference to charlottes comfort in the wheelchair, after 4 1/2 hrs in the chair one hour rest and she was raring to go, we went to the Hare and Tortoise Charlotte ate 8 chicken dumplings, (Gozo) and chicken, rice and miso soup, she did get tummy pains, mainly because she was so full, but she wasn't sick so thats a major improvement.

Going out more is fantastic, but it also exposes Charlotte to people who rudely stare, Charlotte is beginning to look at the reality of living with the many losses she has sustained. Please continue to leave her messages, she can access them herself now

Richmond, Yorkshire Fundraiser

2006-11-12T20:17:00.000-08:00

Charity Night
In aid of
The Charlotte Robinson Trust
And the Meningitis Trust
Friday 17th November 2006
From 7.30pm [no admission after 9.30pm]
At
Richmond Cricket Club
Live Music from Ben and Anth
Gordon Styles
Everplayer
Raffle
Music for all generations!
Tickets £5
Available from Julia Young 01748 812861 after 6pm
Strictly no alcohol under 18

sitting pretty

2006-11-12T18:19:00.000-08:00

Charlotte playing volleyball with her physios

2006-11-12T15:43:00.001-08:00

Peter Pan

2006-11-10T13:42:00.000-08:00

Charlotte has recovered brilliantly after such an awful weekend, Dialysis was done Tuesday and Friday, but the fluid balance is still being effectively managed by Charlotte, its mainly raised phosphates that are causing a problem, and drugs have been started with the hope that these can eliminate the need for dialysis, I really hope so, keep your fingers crossed.

One major first today was a bath, they have a funky bath that really allows a good wallow, we couldn't get Charlotte out until she was very crinkly.
Another first was Charlotte sitting up herself and staying sitting up, her physio's have great fun playing volley ball with Charlotte, excellent for the abdo muscles.

Daniel came to interview Charlotte from the Hounslow Chronical, they did a piece when Charlotte was first ill to support her and another on the walk that Brentford School did to raise money for Charlotte's trust, It was very emotional for both of us to go through the story and for Charlotte to talk about her legs.

GOS brought us tickets for peter pan on ice in crystal palace, we went by black cab, which was great and had us both planning other outings around London now the possibilities were opened, he threw us out miles from the entrance and we got stuck with loads of stairs, so many people helped, Peter pan was brilliant, but Charlotte felt a bit ill so we left early, we had brilliant ambulance men, who got us home in half of the time of the black cab.

Rachel Charlotte and I have just got back from Pizza hut, totally stuffed and settling down to watch a film.
Charlotte and I are looking forward to a haircut tomorrow, look out for the photos.

Brilliant News

2006-11-08T11:15:00.000-08:00

I am taking over updating the blog (jayne) as Sophie is very restricted at UNI and this way means Charlotte can have a bigger input as she is so much better.
The weekend has been horrid and Charlotte was not well at all, I am glad to say she is much better now.

The brilliant news is that when Charlotte went for dialysis this week she did not have to have any fluid removed, as her body is regulating its own fluid balance. The kidneys are not cleaning the blood as well as she needs it to, but that has also improved. This means there is a good chance of a future without dialysis, everyone keep their fingers crossed and those people who have been praying for her please don't stop yet, we all believe it is making a big difference.

Charlotte is missing the good friends she made at Broomfeild and is over the moon Kerry is coming this week so she can get the gossip.

PICU nurses have been dropping in to visit, and Lois the play specialist who is a big favorite with Charlotte has helped ease the transition.

Sky ward is lovely, Charlotte has views of Nelson's column, centre point and a whole roof top skyline, I will take photos tomorrow. We are on the 6th floor and the ward has only been open for 6 months. Charlotte has her own room and is still not able to mix with other patients because of her bugs, but the room is large bright and airy with her own bathroom, very much 5**

There is a lot to do here, Charlotte has already won a competition with a word search on radio lollipop and is having her music played. The internet connection is up and running so she can see the comments on the blog, so please everyone have a go and leave her a message. If anyone wants to visit please phone her, she is managing her own social diary and would welcome visitors, she just can't really tell if she will be ok on the day so its possible you may come and she will be sleeping.
The best time would be after 4pm as the rest of her day is pretty full. Weekends are very laid back and we may be able to escape with you.

We are all working on a weekly program which I will put on here this week which will make planning visiting easier.
physio is twice a day, 11.30 and 3.30 for an hour each, they have been amazed at how strong she is and have given her weights to increase her muscles, Charlotte is aiming for a 6 pack.

We are making lots of plans at the moment, Charlotte will be 15yrs old on the 8th December so we are discussing birthday outings all ideas are welcome.

All in all she is doing well and is so much better, thankyou all for your support
love jayne and Charlotte

Are you up North, wanting to raise some money for Charlotte, have some fun and get fit all at the same time?

2006-11-07T12:42:00.000-08:00

There’s going to be a sponsored walk in York on 9th December to raise money for The Charlotte Robinson Trust. If you want to get involved contact El for an information pack at walkforcharlotte@googlemail.com or phone on 07894 802791 or checkout http://elstannage.blogspot.com/ for more info

Thank You All!!!

xXx

Out Of Intensive Care AT LAST

2006-11-05T08:55:00.000-08:00

Charlotte has now been moved to the Sky Ward in the new and fancy part of Great Ormond Street! She moved here on Thursday but hasn't been feeling too great. She has developed a urine infection and has acute constipation and bladder spasms caused by the urine infcetion which is, all together, causing her intense pain. She is unable to have adequate pain killers as they would either make her constipation worse, or cause problems for her renal failure. So she having to cope with it, which is hard!she has been screaming in pain with the spasms all day friday and saturday, she wasn't coping and we had to call mum and Rachel back from Paris on sat morning. Its sunday now and they have given her medicine to relax her and found some pain killers that are helping.She is really having a very hard time at the moment and its difficult for us all to see and hear in so much pain, it seems so unfair, she has sufered enough.

She hasnt eaten a meal for over a week and hasn't even been able to hold down water since Thursday, she isn't having any nasogastric feed, so ontop of everything she is also feeling faint and weak because of this.

Hopefully this will be sorted by mid-week next week. At the moment she goes for dialysis 3 times a week and her bladder seems to be producing fair amounts of good urine. So there are high hopes for her not needing long-term dialysis or a kidney transplant (fingers crossed)

Leaps And Bounds

2006-10-24T06:34:00.000-07:00

Hello all,

We have pictures! Seeing Charlotte over the weekend was fantastic! She is doing so so so well!! We went out almost everyday and Charlotte could tolerate being in her wheelchair for roughly 2-3 hours each time. It was amazing to her sitting next to us in restaurants, she has been trying so hard and she's making incerdible progress.

She know has a laptop that will hopefully be hooked up to the net very soon so she'll be able to read this blog herself! And even write stuff on it about how she's doing. She is enjoying her food, especially slush puppies!

At the moment she is still in in high dependancy on the intensive care ward, but this is only because the haemodialysis(or however you spell it!!) can only be done on this ward. She is having a trial run at another type of dialysis that will allow her to move to another, more sociable ward, on Thursday so we'll see how that goes! She is working hard at her exercises, and now that she's eating loads she is getting stronger and feeling better.

Here are the latest photo's ( i still have to get the ones from my birthday meal developed, but they should be back by the end of the week)

BROOMFIELD

Charlotte and Mya

Charlotte with a 'red slushy-puppy' tongue

Charlotte wants lots of visitors!!! So if you want to see her go now! She's in great spirits and is bored :) email me if you need to know which ward to go to

Thanks!

xXx

THANK YOU BROOMFIELD!

2006-10-10T06:50:00.000-07:00

I'm sorry this has been a bit late in coming, but we all want to say a massive

THANK YOU

to all the staff at Broomfield who put up with our sleepy, irritated states and constant questions and most importantly, were such a support to Charlotte! She absolutely adored every single one of you and always talks about you and says she misses you. As we all do! We look forward to the day that we can all come back when Charlotte is up and walking and feeling fantastic!

We couldn't have hoped for a more friendly and supportive group of professionals to help us all get through such a horrible time. We will be eternally grateful to you all!

All our love Sophie, Jayne, Rachel and Charlotte

xXx

The latest update

2006-10-10T06:20:00.000-07:00

Hello all,

Firstly, the Handy Helpers, Steven and James Smith from Chiswick who have been raising money for Charlotte by doing 'odd jobs' for people such as gardening and cleaning etc, have now got a blog spot. The address is www.handy-helpers.blogspot.com

They have raised a fantastic £1019.90 so far! Please let them know if you have any odd jobs that need doing and all proceeds will go to The Charlotte Robinson Trust.

Check them out!

As for Charlotte, she is doing well! Yesterday she started having lessons for an hour every day which will hopefully be a good way to keep her a bit more entertained and have a break from videos and dvd's! She goes on a wheel chair for an hour a day, which is amazing progress from when i last saw her! When i was down in early September she could leave her room in what can only be described as a massive padded recliner chair. And even that was very painful for her, so being able to get into a wheel chair is massive!

She had a short 'stint' of being able to eat loads, but is now back on antibiotics for this pseudomonas bug that she cant seem to rid of, and they are making her sick again.

She is in very good spirits and is being amazingly strong in coming to terms with her lack of mobility. In fact, she is unbelievably strong. An absolute inspiration! I cannot WAIT to see her!!!!!!!!! From my conversations with mum that is the main feeling i get.. that she is astounding everyone with her attitude and the new nurses and doctors are falling in love with her already! Who couldnt.

I hope everyone is well, i will look forward to posting some pictures of my birthday dinner with her in a few weeks :)

Lots of love
Sophie

xXx

From Angela, with love...

2006-10-10T06:10:00.000-07:00

...to everyone who sponsored me for the Great North Run. Between us we've raised over £1,200 for The Charlotte Robinson Trust. If you've made a pledge but haven't yet coughed up (!) I'll be hounding you when I return from Frankfurt on 10th May.
For those of you who like reading about the pain of others, my race diary goes something like this:

***
6am: get up in order to get to my aunt's house (to meet Naomi and Mike who are also running) for 7.15am. End up having to leave my breakfast on the table.
7.30am: still waiting for my aunt and other runners to get ready.
7.40am: finally set off. Naomi brings her breakfast in the car. I eat half of it.
8.30am: say goodbye to all three sets of parents at Heworth. Mam wishes the other two good luck and then clasps me to her bosom with a loud 'aw, pet'. Dad reminds her I'm not going off to war.
9.30am: take up our position, having queued half an hour for a port-a-loo. I'm quite near the back. Annoying DJ rabbits on, playing lots of Queen hits and the theme from Chariots of Fire. Then he asks us all to spare a thought for the people and causes we are running for and plays 'Abide With Me'. Everybody starts crying.
11.30am: finally cross the start line, about half an hour after the official start. The winner is already more than half-way round the course.

Miles 1 - 5: unbelievably difficult. One hill after another and boiling hot followed by heavy rain. I'm behind a bloke dressed as a lady sumo wrestler (in a pink bikini) and his mate who is in full clown get-up. Clown sprays a copper on the Tyne Bridge with his water pistol. Clown doesn't get arrested.
Miles 5-7: bit better, course levels out a bit and weather warms up. Fire Brigade are hosing the runners as they go past - I veer into the spray until I remember I'm wearing an ipod and veer out again just in the nick of time. Get into my stride and start to run more quickly - overtake two blokes dressed as Batman and Robin and someone else in a Scooby-Doo suit. Feel a bit smug.
Mile 8: spot a bloke with a garden hose spraying runners from his position on the roof of a bus shelter. First ambulance goes through the crowd. Spot a Haribo cherry on the road - seriously think about stopping
Mile 9: another two ambulances goes past
Mile 10: spot an enormous hill ahead
Mile 11: a mile-long enormous hill which is also a residential road. It is lined with women bearing trays of orange squash, chocolate biscuits and kids holding out grapes and slices of apple. Fourth ambulance stops at top of said hill.
Mile 12: get to the brow of the hill and see the sea! Best feeling ever. Still another mile to go though.
Mile 13.1: longest fecking mile in history. Goes. On. For. Ever. Finally cross the line in 2hrs 34mins. Very very very happy about that.
Stop running. Have a bit of trouble walking. Find the others after about 20 mins. Suddenly very cold so have to be wrapped up in my attractive turkey blanket. Walk 20 mins to South Shields Metro station (the end of the line) to find a sea of people waiting. Walk 25 minutes to next station, come back down the line to South Shields and stay on it, then go south again to Heworth. Parents grumbling a lot by this point. Try not to remind them that I'm also a bit tired of walking around having run a half-marathon. Finally get home at about 5pm...
Stairs, bending and general mobility all still a bit beyond me. Haven't completely discounted doing it all again next year though...
Thanks again,
Angela x

Get your tickets now!

2006-10-04T10:19:00.000-07:00

You can now get your tickets for the fundraising gig in Ascot!

The venue is The Jagz Bar and it is next to Ascot train station, which is on the mainline up to London.

It takes place on the 23rd of November, 8pm-1am and the lineup includes

Minechild
Green Room Sanctuary
Chris Roberts aka 'Chunky Funky' (resident DJ from Stringfellows, Paris www.stringfellows-paris.net)

Tickets can be bought using a credit card at www.charlotterobinson.org using paypal, and they are £10 each.

Please come along and bring your friends! We need as many people as possible to make this night excellent!

x we may be able to help find cheap accomodation for the night as well, so please get in touch if you need to.

Great Ormond Street

2006-10-04T10:04:00.000-07:00

Finally she has been moved. She is still in the intensive care ward as she still needs the haemofiltration as her kidneys have not started working, and they only deal with those kinds of machines in intensive care!

But she is doing really really well!! She's eating LOADS of food and is chatty and a bit more up beat. She is also now able to roll herself over for bed changes rather than having to be rolled by the nurses which shows that her wounds are healing well, and that she's less stiff and her muscles are getting stronger. All in all she's just getting better!

At the moment it's a bit difficult for people to visit Charlotte. I know alot of people have sent me emails asking if they can see her. The rules for visitors in the intensive care ward are very strict, as you can imagine, and only 2 people are allowed to see Charlotte at any one time. She is also quite reluctant to have loads of people coming to see her in one day. So please dont be offended if she says that she doesnt want to see you, sometimes she just finds it too hard! She is still very weak and tired.

Hopefully i'll have some more pictures up soon to spice up this page a bit!

Love to you all.

Sophie

xXx

Bit of a technical hitch

2006-09-28T08:25:00.000-07:00

Hello everyone

I have been trying to post a blog for DAYS but the computers in the uni library havent liked the 'blogger' website. It seems to be working this time though!

Over the weekend Charlotte had to be ventilated again as her breathing became, yet again, too difficult for her to manage. This was because she had too much fluid in her body and it had filled parts of her lungs. There was some talk of her having pneumonia, but i think that turned out to be untrue.... in any case, she's much better now!

She was supposed to be moved last monday, but because she was still unstable from the weekend the move was delayed. A party was planned for her on Sunday night as a 'leaving do' but of course she wasnt well enough, so now there are tonnes of party poppers and sweeties in my mum's room waiting to be put to use! She'll hopefully be moved early next week. There is a chance she could get moved tomorrow! But as yet no-one can really say.

She is going to Great Ormond Street even though they were reluctant to take her because she has so many things to be dealt with.

All of her skin grafting areas are healing well, and areas which were deprived of fat and tissue and muscle are starting to 'plump out' a bit which is fantastic. Unfortunatley her kidneys are still not functioning well. It looks as thoug this will be a long-term problem for Charlotte but we're waiting to see what the renal specialists at Great Ormond Street say about this.

On the whole she is doing well :)

i'll find out more and try and keep the blogs a bit mroe up-to-date from now on!

Sophie
xXx

More Sponsors!

2006-09-26T04:10:00.000-07:00

I posted a blog a while back asking for sponsors for Angela, our cousin, and Mike, Angela's friend, to do the Great North Run to raise funds for Charlotte.

This is a reminder that the run is
THIS SUNDAY 1st

OCTOBER and they need

MORE SPONSORS!!!!

Please get in touch with either me at sophie@charlotterobinson.org, Angela at rose.aj@gmail.com.

Sponsor these two generous people! Every little helps! You could also go along if you live nearby and bring them something nice. Like lots of cheering and hand clapping, and maybe a drink!

They have been working very hard for this and want their hard work to make a difference so GET IN TOUCH!

Thank You

xXx

Long Distance

2006-09-19T06:06:00.000-07:00

Hello all,

Good news! The doctors have said that Charlotte might be moving hospitals in the next 10 days! The possibilities are Great Ormond Street and St. Mary's, we're not sure which one yet.

Charlotte has been really suffering on her stomach and has pulled muscles in her chest from being sick whilst lying on her stomach. She is being moved from her stomach to her back, which is incredibly difficult and painful for her as it involves being 'flipped' over, and when she is so sensitive and her mucles are seized up, is incredibly painful for her.

She has been very quiet and down. We managed a few giggles when i went to see her, but for the most part she just wanted me to hold her hand and stroke her hair. Getting out of Broomfield will feel like a big step for her and do wonders for her motivation, i hope.

That's all the infio i have for now,

Lots of love

xXx

Update

2006-09-11T09:20:00.001-07:00

Hello everyone.

It's great we have so many people contacting us wanting to organise fundraising events! We have so many! Brilliant!

I went to see Charlotte on Thursday afternoon. She had just come out of theatre when i arrived and the doctors had decided, after having difficulty getting the tube down Charlotte's throat to ventilate her for the grafting operation, that she wasn't quite ready to have the tube taken out. So she was ventilated over night and up until about 3 pm the next day. They extubated her, which was very uncomfortable as she was quite awake, and she had to have an oxygen mask straight away as her O2 saturation levels were very low. She has remained on the oxygen mask since, as her chest was not open and clear enough for her to take in enough of the oxygen she was breathing in.

She is also now being nursed on her stomach, which apparently is not quite as bad as she'd thought it would be. When Charlotte came round from the sedation she was very tearful and upset. She told me she "couldn't cope anymore" and asked for many hugs while i was there. She is definitely finding it difficult. When Rachel went to see her on Sunday Charlotte had a massive tantrum and swore and swore... very loudly, screaming infact, which i think made her feel better!

As far as i know Charlotte's breathing is getting better and better by the day and she's feeling relatively bright in herself. She had an operation today to take off the temporary 'dressing' type thing off today. I'll have to find out more about it and post another blog tomorrow!

I thinks that's pretty much all i know for now.

Hope everyone is well! Keep the messages coming!

Love Sophie

x X x

Update

2006-09-11T09:20:00.000-07:00

Calling all northeners.

2006-09-11T08:49:00.000-07:00

Charlotte's cousin Abigail has arranged a fantastic night in a beautiful cafe/restaurant in Whitby, North Yorkshire.

Please come along if you live nearby, or if you know someone who lives in/around whitby, tell them to come!

There will be music and wine and a raffle and all money raised will go towards Charlotte.

Either contact Abi or Sue on the number provided on the poster or email me at sophie@charlotterobinson.org for more information.

it will be an awesome so make it along if you can!

Thanks

Sophie

x X x

Handy Helpers

2006-09-11T08:26:00.000-07:00

Hello everyone!

Please have a quick look at this poster. Two very generous lads from Chiswick have offered up their 'handy helping' services in chiswick in order to raise money for Charlotte.

Thanks guys

x X x

Come and jump out of a plane...

2006-09-07T05:14:00.000-07:00

Sound tempting? Well it should!

We have organised a sponsored sky dive on the 28th of October. There are about half a dozen crazy peole who have already agreed to it, and we're looking for more!

We have spoken to a few companies and think we have found one that will do the jump for £185 if there's a group of ten of us (i say 'us', turns out me, Rach and mum will not be doing it this time round... although i will be organising one in Scotland early next year...i will write another blog when the time comes.)

We would hope that everyone would be able to raise around or above £500 (you are jumping out of a plane, you can expect good sponsorships!) £185 of which will go towards paying for the jump (so you will get it free!) and the rest will go towards Charlotte's Trust.

Get in contact with us if you fancy it ( sophie@charlotterobinson.org )

GO ON! BE A DAREDEVIL!

Cheers,

Sophie

More pictures from Harrow, saturday 2/09/06

2006-09-06T04:26:00.000-07:00

The hall of 'The kodak Sports Centre'. Groovey disco.

Mum raffling away the prizes. Can't believe she didn't cheat and get me the swing ball. 'sake mum!

Lots of people

Jayne, Sophie, Rachel and April

Austin boss - The Man.

Abigail, singing Baa Baa Black Sheep. the makings of a star!

Neeeoooos

2006-09-06T01:16:00.000-07:00

Hello everyone,

Charlotte has had a rough week. She has been hot and flushed with pain all over and severe headaches. BUT her wounds have been healing really well! Areas that have been debrided and looked as though they would never heal, are now looking fantastic!
Yesterday charlotte had a 'trial run' of being nursed on her stomach. It didn't go well. According to mum she screamed non-stop for 6 hours in pain, probably caused mainly by her collostomy, but also because of how weak she is and because she has been lying on her back for the last 14 weeks.

After alot of fighting and shouting, charlotte eventually realised that in was in her best interests to try her hardest to really give lying on her stomach a go. So she has promised to try, starting from tomorrow. There is only one condition: mum is not allowed to leave her side the whole time she is on her stomach!i'm allowed to take over the the 'mum' duties this weekend, but other than that mum has been forced to give up her 3 half hour breaks a day and invest in a coffee flask and a packed lunch box!

Charlotte is having her final skin grafting operation tomorrow!! We are all very excited at the thought of this stage of Charlotte's recovery almost being over. Once her skin is grafted all over she will stand a much lower chance of contracting any scary bugs and will 'fill out' and so hopefully, start to be able to move around more and eventually, we can take her out in a wheel chair somewhere beautiful! Although, unfortunately by then it will be autumn and probably rainy.

There is a slight concern at the moment as charlotte is complaining of frequent headaches and seems to be sleeping an awful lot. Sometimes it is very difficult to wake her, which is worrying the doctors and they want to perform an MRI scan just to check what's going on 'up there'. There is talk of having to take her to Great Ormond street to do this, but this hasn't been confirmed yet. She is not really well enough yet to be moved.

Below are a few more pics from the Harrow night, enjoy!!

Sophie

x X x

Fun and Handcuffs!

2006-09-05T03:13:00.000-07:00

Here are some pictures, as promised, of Georgia and Clare doing their sponsored 'handcuffed' 46 hours. The two girls had to go out and buy a second lot of handcuffs after their first ones broke within 5 minutes!

Well Done Girls!

x X x

2006-09-04T04:53:00.000-07:00

Thank You! everyone who came to or participated in the fundraising event in Harrow last saturday!

We raised £1700 at yet another fantastic charity event which was held in Kodak sports ground in Harrow. We would like to say a special thanks to Shailhu for organising the event which included a delicious BBQ, a live performance from Austin Boss, a raffle and auction where people won prizes such as a digital camera, a playstation, and swingball!! (i was GREEN with envy!) and finally a fun-loving DJ to take us into the late hours of the evening. It was brilliant, and we really were grateful to those who came along and showed their support to all of us. Thank you :)

James, Rachel, Steven, Sophie and friend!

Bernice Philips and her grandson, with Abigail, who stole the limelight with a beautiful rendition of both Baa Baa Black Sheep and a song about a horse!

April Marshall and her daughter Crystal

Charlotte is doing well. I went to see her for the day yesterday and caught up a bit on the details of how she is doing. She was bright, lively and sarcastic! Which we love to see! Don't know if the hospital staff appreciate her sarcasm though! Now more than ever it is important for Charlotte to be doing her exercises with her physio thoroughly. She still has fluid in her lungs, but also still has intense nausea, and so finds it very difficult to do the breathing exercises as the large breaths make her feel sick. Being on the haemofiltration has greatly improved her lung function and her O2 saturation levels are much higher and much more constant as it forces the fluid from her lungs, back to where it should be. Charlotte was able to have a break from the Oxygen mask and nose 'prongs' for a while yesterday for a good couple of hours before her levels started to dip a bit.

There are many after effects of being so critically ill. Charlotte has severe weakness in her muscles, especially her fingers and arms and is having to to do exercises as often as she can to try and strengthen these muscles. At the moment she cannot straighten her fingers or make a fist tight enough to hold a pen. She has started trying to hold her own cups and can almost brush her own teeth. I think this kind of independance will be especially good for her morale and determination. Hopefully these little triumphs will give her some satisfaction and motivation.

Unfortunately, as i noticed yesterday, she appears to be losing small amounts of hair. There is no telling how much she will lose, at the moment it is hardly noticeable, and will definitely grow back. This again, we have been told, is a by-product of being hospitalised for such a long time.

Yesterday i read her the messages people had sent her last week and it made her smile. Giving her some way of bringing her mind out of the hospital gives her a break the monotony, and hopefully soon we can get her laptop up and running and she can message you all back. When this happens we'll create an email account for anyone who wishes to talk to her. How exciting!

Hope you all had a lovely weekend, thanks again to everyone who contributed on Saturday!

Sophie x X x

A novel approach to fundraising!!!!!

2006-09-01T04:25:00.000-07:00

Two of Charlotte's friends, Georgia and Claire decided, since they couldn't come to the fundraising bash on Saturday, that they would organise their own fundraising idea:

A sponsored 46 hour handcuff!!!

Yep, the two girls will be handcuffed together for 46 hours in order to raise money for Charlotte! This fundraising event will be taking place this Saturday, 2nd of September and the girls need LOTS OF SPONSORS!!

Please get in touch with Georgia's mum billie at queenb1@hotmail.co.uk to sponsor these two of Charlotte's friends!! We will post photos after the weekend, should be entertaining! :)

A BIG Thank You to Georgia and Claire! What an awesome idea :)

Charlotte is doing OK. We spoke to Kerri, the nurse who was looking after Charlotte last night, and she told us that she thought Charlotte's wounds are still healing brilliantly despite how ill she has been over the last few weeks. she also said that Charlotte seems alot brighter in herself, which is amazing news, because it's awful to see her so down and miserable for so long.

Recently there has been talk of moving Charlotte back to Great Ormond Street's Renal unit as soon as her wounds have healed as her kidneys need specialist care now, as they are not functioning properly. We still dont know exact timescales, but with any luck it will be in around 6 weeks. Maybe less.

I though i'd add in a picture of Charlotte doing one of favourite things... a 'waterfall'. This consists of one of us putting a towel under her head, and then splashing water all down her face while she drinks as much as she can catch in her mouth!

After almost 14 weeks in hospital, i suppose she has to find some way of amusing herself!

Bye for now!

Sophie x X x

Charlotte-a-tot

2006-08-30T09:39:00.000-07:00

Hello everyone

I am now back from Glasvegas, but have only managed to see Charlotte for 2 days since i've been back. When we arrived she wasn't too well, and as Rachel mentioned below, it turned out that she had contracted menigitis again. She was very disorientated and was lacking in Oxygen, finding it very difficult to breathe. This was partly because of the silicon bed she has been lying on for the last few weeks, which is great for healing her wounds, but also squashes her shoulders inwards (as you can imagine, she is effectively lying on air, and so she 'sinks' into it). This made the fact that she had fluid in her lungs even more problematic and she will most likely have to be moved from this bed, and nursed whilst lying on her stomach so as she can breathe properly and so she is not putting pressure on the wounds on her back, thus allowing them to heal more effectively.

Charlotte's temperature has been very high for the last few days and we have all been very worried that this was a sign of yet another hit of septicaemia, but she appears to be stabilising now, and is a nice and cool 36.6 (rather than the 38.9 she has been reaching). She is definitely feeling much better, and therefore being more demanding! Mum is coming home tonight and Charlotte will spend the next few days with Dad.

DONT FORGET ABOUT THE FUNDRAISER ON SATURDAY!

Please come along if you have the time. I have been roped into singing again. Having just had an exam i haven't been practising... at all, so it should be amusing for you, mortifying for me! :)

There will also be scrumptious food and goodies being auctioned off (there is a blog entry detailing the venue/time/price etc but if you need anymore info, email me at sophie@charlotterobinson.org and i'll fill you in)

So all is good! and hopefully, getting better now! It's just ridiculous how many times Charlotte has been ill, fingers crossed she is able to carry on healing and take at least 3 steps forward before there are any stumbles!

See you on saturday!

Sophie x

Bank holiday weekend update (25-28th Aug 06)

2006-08-28T07:55:00.000-07:00

I'm not sure I'll manage as sterling a job as Soph with the blog update this week but am going to give it my best shot! Sad individual that I am I made some notes each day which I saved into my mobile (basically cheated! so I would remember everything that happened :)))

Myself and Soph received SMS messages from Jayne in the early hours of Saturday morning (3am) informing us that Charlotte had, had a seizure. Post a frantic phone call at 9.30am we raced over to the hospital arriving about 11.30am.

Charlotte had been experiencing really bad headaches and was incredibly itchy and irratable, the doctors were unsure at this time whether she had contracted the bacterial meningitis or she was having a reaction to the anti-sickness drugs.

Her sheet change mid afternoon was a scary experience as Charlotte was struggling to breathe and couldnt take down sufficient of the gas and air, as such she was in incredibly pain and started to go bright red and then very grey, she had another fit whilst they changed her. Her stats were all over the place and the doctor took the call to continue on and post the sheet change they sat her up (well as much as they can in a silicon bath) and her breathing appeared to improve - although it was still very shallow.

We had another scare later in the evening over a couple of hour period between 9pm and 11pm. Charlotte really couldn't breathe properly at all and she got incredibly terrified and it became a catch 22, the more she panicked the worse her breathing got, it was terrifying for us, so god only knows what it must have been like for her! We also had to deal with a huge shortage of experienced nurses over the weekend period - thank god Jayne was in with her as well, as Charlotte puts it so eloquently, I am a real 'pussy' in those situations!! An hour or so later the same thing happened again and Charlotte has spent the remainder of the weekend permanently with an oxygen mask clamped to her face. The hospital ran another chest x-ray post the second episode and they realised that the build of of fluid on her left lung was increasing.

Yesterday (Sunday) Charlotte wasn't feeling well again, the combintaion of being in hospital for weeks, in constant pain and now feeling sick with a mask on her face adding to the situation must be totally cracking her up!! The nurse I spoke to today seemed more adamant that it was Meningitis than a reaction to the anti-sickness drugs but as they arn't sure they need to keep trying to cover both options :(

Jayne was up with Charlotte a couple of times during the night and I left Jayne and Charlotte catching up on some sleep when I left about 1.30am today. Rugger knackered out from a pretty intense physio session and a massage of her legs which was obviously excruciatingly painful, Jayne because its incredibly hard to be at the hospital and not to want to be in with Charlotte and as nice as the staff are the place has a hideous way of swallowing you up and zapping you of all your energy! I could literlly feel myself begin to get re-charged as we hit the North Circ on the way home.....................

Hope you have a better week than weekend girls!!

My love to you both

Rach xxxxxxxxxxxxxxxxxxxxx

www.charlotterobinson.org

2006-08-23T12:21:00.000-07:00

The web site is up!

So go and check it out, it's good.

I've been away and studying for my exam (which is tomorrow :S) so i've not seen Charlotte for a week. But from what i gather from my mum and Rachel, she is doing well and seems alot happier in herself. She is still feeling sick all the time and so the next big step is to get her eating. Hopefully this will cheer her up as well as get her better.

Not much to report, which is a good thing!

Hope you're all well

Sophie

x X x

Today

2006-08-18T01:51:00.000-07:00

We've decided that as well as a way for people to keep in touch, we are going to make this blog a bit like a diary for Charlotte so she can look back and see how events unfolded. Not sure if she'll be particularly excited about this, but i think it's important that the little things as well as the big things , are noted down because alot of what she's going through will be a blur to her a few months down the line!

So, i'm afraid that means more detail!

Charlotte's skin grafting operation yesterday seemed to go OK, but in the night she started to bleed, which unfortunately reduces the risk of the graft 'taking' to her wound. Because this happened during the night, she didn't get much sleep, and when the nurse woke her up this morning to do her breathing exercises, she grumpily said "I am a human being, human beings need sleep!" It's nice to hear a bit of that Charlotte attitude again!

She is still feeling sick all the time but seems alot brighter after knowing that her wounds are so much better and we can finally say that she is going to be moving in the next 6-8 weeks.

Charlotte's Nanna and Godmother are over to see her today, so that should cheer her up as well!

Thanks again for all the messages and comments everyone is sending, it's really cheering her up.

Sophie

x X x

The Great North Run

2006-08-17T10:46:00.000-07:00

Even more fundraising!

Every year 'Team Macmillan', a cancer support charity, hold "the world's largest half-marathon" to raise money to provide all kinds of support for those suffering from cancer.

This year, Angela Rose (Charlotte's cousin) and Michael Salisbury will take part in the run. Angela will have a second sponsor form with which she will raise money for Charlotte, and Michael, who has registered as an independant runner, will donate all money he manages to get sponsored, to Charlotte's Trust fund.

Thank You Guys!

Please, please sponsor these two generous and energetic people! Even just a tiny bit will make a difference. OR, if you live in the Newcastle area, why not go along and cheer them on!

To sponsor either Angela or Mike please contact either

angela at : rose.aj@gmail.com

or sophie at : sophie@charlotterobinson.org.

Thank you

x X x

BBQ Fundraising Event. 2nd September 2006

2006-08-17T02:21:00.000-07:00

Fundraiser BBQ, 2nd September 2006
£5 a head

The night will include BBQ, Raffle and Auction and Licensed Bar (all payable extras i'm afraid)as well as a DISCO! All proceeds (apart from the bar) will go directly to Charlotte's Trust Fund.

Place: Harrow Sports Gound
Harrow View
Harrow
London
Middx HA2 6QQ

Time: 4.00pm - 11.00pm

All the family welcome!

Please contact Shailu on 020 8424 7610 to buy tickets or for more information, or email me at sophie@charlotterobinson.org.

Thank You

x X x

Acupuncture and Indian head massage.

2006-08-17T01:51:00.000-07:00

Hello.

Firstly, thank you so much for all your messages! I've been sending them in to Charlotte every day (she's been getting about 4 or 5 emails or comments each day) and it's really cheering her up! I expect it's quite easy to feel isolated and forgotton about when you're in hospital for 3 months, but it's nice to know that she has so much support and encouragement, as she starts to get better, this is the time she will need it most.

Charlotte's sickness still hasn't subsided and they think this could be linked to an inflamation of her gut, which is also causing the stomach pains (thankfully no gall stones). She was very pleased to hear yesterday that her wounds on her back are looking considerably better. She will go in to theatre today (infact, she'll be in now, as i write this) to have more skin grafting done on her back, which is good news because the sooner her wounds are covered, the better chance she has of not developing any more infections! And the sooner she'll be home!

One of the surgeons yesterday guestimated 6-8 weeks before Charlotte can be moved nearer to home, which is far less than we had imagined :) It goes to show what a little trooper she is, and also, what an amazing team of doctors and nurses there are at Broomfield! Thank you all so much for taking such good care of Charlotte and not only that, but befriending her and showing her so much emotional support. She absolutely adores you all (even the physios!!!)

Charlotte had acupuncture on Tuesday to try and ease her nausea and an indian head massage which made her feel relaxed and happy. I think it's lovely that those were organised for her, something a bit out of the ordinary is always good in these situations i suppose.

There's not really much else to say today. She's doing well, still very down but she is picking up vibes from mum and the nurses and doctors, that she's doing really well and is definitely on the mend and i think that's giving her a bit more motivation to hang on in there.

I'll keep you posted!

x X x

A few pictures of Charlotte when she was little and oh-so cute

2006-08-15T05:23:00.000-07:00

2006-08-15T05:22:00.000-07:00

2006-08-15T05:21:00.000-07:00

2006-08-15T05:18:00.000-07:00

Donations

2006-08-15T05:12:00.000-07:00

Hello again

A few people have asked how they can make a donation towards charlotte's trust fund. We are hoping to have a section on Charlotte's site that will enable people to make a donation by card. Until then, cheques can be made payable to 'Charlotte Robinson Trust' which you can send to

Jayne Robinson
71 The Avenue
Chiswick
London
W41HJ

Thanks to everyone who has made donations so far, we have a long way to go to get our target £50K, but we are well on our way and every little helps!

x X x

Over the weekend...

2006-08-14T04:01:00.000-07:00

Thanks to everyone who left comments on this page. I am so happy to see that people think this blog is a good idea :) I am going to print all comments left for Charlotte and send them to her every week so she can see how much support she has. If you want to send a meesage that will go directly to Charlotte remember you can also write an email to sophie@charlotterobinson.org and i will forward on any messages to her. When she starts to get better she will also be able to reply!

I wasn't really sure how to write this blog in a way that would be easy to read and informative enough without being too lengthy (because trust me, i could make it lengthy). So i've decided to write in any information that I would find interesting should i be in a readers position.

I stayed with Charlotte from Thursday, mid-day until Sunday mid-day. When i arrived she had just returned from her shower and was shivering and cold with all her teddies snuggled in around her. She is having showers (where they clean Charlotte's wounds on her legs, hips and back) every other day as the pseudomonas bug that caused her septicaemia outbreak a few weeks ago, is still present in her wounds. This means that Charlotte is still 'on the tight-rope', at the risk of developing septicaemia again. However, she has been fighting it for long enough now for us to be able to say that she is building up some resistance to it and the bug is staying in her wounds and not entering her blood.

She warmed up slowly but was very sleepy for the rest of the day and only woke up in stops and starts to ask me to sponge her down with icy water. Even though her temperature is not increasing (she has been a stable 37.0/37.1 all weekend) she keeps getting hot flushes which the doctors think is linked to her constant nausea. The poor thing has intense nausea day in and day out and is sick every 4 or 5 hours.

Friday was pretty much the same except she started to complain of stomach pain. This pain made breathing very difficult and she started to breathe quicker and more shallow. The doctors have um-ed and ar-ed and now think that she may have gall stones. Not very pleasant for her. This isn't definite yet though, i will let you know as soon as we know.

On Saturday she had a 'relaxing' day where she had no shower or sheet change and was left alone in terms of being tampered with by doctors and nurses. Whereas Thursday and Friday she was sleepy and appearing very down and apathetic, on Saturday she seemed to perk up a little and while watching 'Bruce Almighty' she even managed a few smiles! It's been so long since i've seen any sparkle in her eye i could have cried with happiness!

I haven't seen her wounds for some time, but the doctors tell us that although her back is doing much better, her bottom is not so great and the wounds are very deep. We don't know what this means for her long term recovery yet, we just have to wait and see and hope that she heals better.

Not much to report this weekend, i hope this is the kind of information that will help you feel a little more in touch with what is going on, as i know it's hard when you're not here as you feel so far away.

I hope you are all well, and if you have any suggestions on how to make this blog more informative for you, just let me know

Love to you all, Sophie x X x

LISTEN UP!: Another fundraiser on the horizon.

2006-08-09T08:45:00.000-07:00

If you didn't get a chance to come along to the last fundraiser... come to this one!

On Saturday the 2nd of September there will be a fundraising event for Charlotte held at

The Kodak Sports Ground
Harrow View
Harrow
London
Middx HA2 6QQ

It will be a night of food and drink and lots more....
The details of the night are yet to be confirmed, but jot the date down in your diary and keep an eye on this blog and we'll update you as soon as we know more.

Look forward to seeing you there!

Charity Gala Bash at The Birdcage 3rd August 2006

2006-08-09T03:38:00.000-07:00

THANK YOU! To everyone who came to our first charity fundraising event!

It was a night of music and fun at the Birdcage in chiswick as there were performances from Charlotte's sister Sophie and her friend Roz, and Eliot, barman at The Birdcage. There were family friends dressed as 'sexy nurses' who were in charge of the charity buckets, one of whom was auctioned off to strip! As well as stripping nurses, there was The Birdcage's very own private art collection and stunning collection of wooden birdcages that were also auctioned off to raise money for Charlotte's Trust Fund.

We made an amazing £2500 that night! So thank all of you who came, and keep an eye on this blog to find out about the many more fundraising events that will be happening in the near future.

CD's of the professional photographs taken of the evening are avilable to buy for £10. There are 160 pictures on this CD and they are very amusing! Definitely worth a tenner! Please email sophie@charlotterobinson.org and we'll sort you out with one.

For further information or for contact details of where to send any donations please go to Charlotte's web site . This web site is currently in progress and so there is a holding page up, but shortly you will be able to give donations by card.

All donations and money raised will go towards supplying Charlotte with a trust fund that will support the cost of her prosthetic legs and her general quality of life.

Thanks again, we'll keep you posted ;)

2006-08-09T03:02:00.000-07:00

Charlotte's Story so far...

Monday the 29th of May. After a long sleepless night of sickness, camping in the Alton Towers campsite, Charlotte took to the shower to try and sooth her headache and refresh herself. No sooner had she stepped in when she collapsed and fell into a semi-conscious, delirious state. Her friends were nearby and promptly took her to see the on-call doctor who immediately called an ambulance to the nearest hospital in Stoke-on-Trent. It wasn’t until Charlotte was inside the ambulance that the paramedics noticed red marks beginning to form on her neck. It was the trademark Meningitis rash.

She was rushed into A&E and pumped full of liquid and drugs to keep her blood pressure up and her heart beating and was placed on a ventilation machine to keep her breathing. Within hours she was unrecognisable. She was bloated to three times her normal size with 7 extra litres of water escaping from her damaged blood vessels. By the time her family arrived the doctors warned she had a 30/70 chance of surviving.

Charlotte’s fragile state continued for 10 gruelling days as day by day, doctors advised family and friends to take each hour at a time. Any one of the countless times that Charlotte’s blood pressure dropped it could have taken just minutes for her body to give up. But Charlotte is strong. And finally, on the 8th of June, she began to take a few breaths on her own and her blood pressure, heart rate and temperature began to stabilise enough for everyone to allow themselves to hope. The rash had left vast areas of dead skin, tissue and muscle, especially on her legs and around her sacral area. Her feet had no pulse and her legs and fingers were cold and steadily turning from red to black.

A CT scan showed that there had been some bleeding into the *spinal fluid* area of her brain and her reluctance to wake up suggested there could possibly be some form of brain damage. However, on the evening of Friday the 9th of June, although very disorientated and still full of pain relief and sedative drugs, Charlotte slowly began to come round and return back to herself.

At this point Charlotte was awake and breathing and it was possible to wean her off of some of the isotope drugs for her blood pressure. However, her gut, liver and kidneys were still showing no signs of regeneration and the doctors could still not find a pulse in her feet and fingers on her right hand which were steadily turning black. Also, the extra fluid which had been needed to steady her blood pressure had now begun to seep through the skin on her legs and within a day they were covered in blisters so severe, the hospital would need to treat them as 95% burns.

Because the damage to her legs would have to be treated specifically, and the fact that Charlotte was currently in a paediatric ITU which did not have the facilities to properly deal with a teenager, the decision was made to move her closer to home to Great Ormond Street Hospital in Russel Square on the 11th of June. Here she could receive specialist care for her renal failure and be nearer to her friends and family.

Within 24 hours of settling into her new environment, Charlotte’s blood pressure began to drop and her temperature yet again increased until dangerously high and it became suddenly apparent that somewhere in her extensive wounds she had become infected and was now going through a second hit of septicaemia, similar to the meningococcal bacteria she had first contracted. This obviously had devastating effects for her liver and the areas of her body which were previously beginning to heal. Charlotte was unconscious for yet another 7 days.

By this time it had been over two weeks since she was first hospitalised and since her feet and legs and fingers had been first affected. Now the outcome was looking grim as her fingers on her right hand and two fingers from her left along with all her toes, which were steadily turning black were now mummified and her legs were in a bad way. While still in intensive care in great Ormond Street a specialist burns surgeon from Broomfield hospital in Chelmsford came to perform debridement surgery on Charlotte’s legs and sacral area and advised that she was better off in the specialist burns unit in Broomfield.

2 days later, on Sunday the 23rd of June, charlotte was taken to Broomfield in a CAT mobile intensive care ambulance and placed into the burns intensive care unit. This is where she has remained for the past 7 weeks and where she will remain for the remainder of her recovery.

After the debridement surgery in Great Ormond Street, Charlotte’s legs were in some places, deprived of so much tissue and muscle that her leg bone was visible. It could now be confirmed that the bones in her feet were dead and a decision was made that to give Charlotte the best chance of mobility, they would need to amputate her legs below the knee. By this point they also knew that the fingers on her right hand were also beyond recovery and would also need to be amputated. However, her left hand made a remarkable recovery with only the very tip of her middle finger remaining black. Finally there was some good news as her kidneys started to produce urine and it seemed Charlotte would be able to begin to be able to heal her wounds.

She has been in severe pain since her amputation and then had to undergo skin grafting to apply skin to her thighs after her own skin, tissue and fat being removed in the debridement. This skin has been grafted from her stomach and chest, her back and her right arm which has left Charlotte in great discomfort and severe pain on almost every part of her body. She was then susceptible to countless numbers of infections which can greatly slow down the healing process and doctors advised that it will be at least another 8 weeks before she is able to return home.

On Sunday the 16th of July Charlotte contracted pseudomonas. This relatively harmless bug that in you or me would cause an upset stomach, took over Charlotte’s body and by Wednesday she had gone into shutdown and yet again become septic. This septicaemia, like before, was damaging every organ. In the next 4 days Charlotte condition continued to get considerably worse as her immune system showed signs of not working effectively and therefore not getting rid of the infection which was still being pumped round her body in her blood. On Saturday the 23rd Charlotte became grey and her heart traces began to look tired and her blood pressure took several dramatic drops which suggested that her heart was not effectively pumping blood around her body. The doctors told us all that it would take a miracle for her to survive and we were advised to prepare ourselves because they couldn’t see how she was going to make it through the night.

Charlotte defied all medical logic and the next day began to look better. Her colour returned to more of a pink than a grey and her heart began to regenerate. The miracle that all the doctors and nurses had said we’d need, had happened. Although, at a cost. This dramatic hit to her body had lasting effects and now Charlotte will need a colloscapy which will leave her intestines outside of her body in order for them to heal properly for the next 6 months. They also had to cut away more of the tissue and fat around her sacral area and are now worried about the condition of Charlotte’s muscle in this area, which could have detrimental effects to her quality of mobility as her strength will be severely weakened in an area which would ordinarily support most of her weight for walking. Her fingers and some of her palm on her right hand also had to be amputated as they were infected. Charlotte’s condition will now be considered unstable and very vulnerable for the next 2 to 3 weeks.

On the 5th of August, yet again we noticed a small rash developing on Charlotte’s left arm, the only part of her (apart from her face) that isn’t covered. After 3 days of watching and waiting, the doctors then discovered that it was in fact, another infection. Apparently the same one as before, pseudomonas. Charlotte appeared to be fighting it off well at first, but this morning, on the 9th of August, she is showing signs of struggling to keep the infection under control and runs a substantial risk of going into her fourth hit of septicaemia.

Charlotte Robinson

Lately...

Chiswick Moran Fundraiser Photos

Fundraiser this coming Sat - 14th July 07

Rugger in Marbella

Canal Barge Trip

Skydiving film

14th July 2007 - Chiswick Moran Fundraiser

Back to school...........

Charlotte starts school again

HUGE CHISWICK FUNDRAISER

Talking to Charlotte........

Check Pip out!

Summer parties :)

Murder Mystery.............

Congrats to the skydivers.........

Check out the superstar walking..............

Thanks to the skydivers.........

Well done Steph & Jo

The little superstar........

Pigeon sale raises a whopping £6,775.00

Thankyou to 'Mothers & Others' in Barnet

Charlotte walked.............

Charlotte's Charity Night

Party - 29th May 2007

Purple Butterfly Walk

Fleet - Half Marathon

Skydive on the 10th March 2007

Half Marathon in Reading

Rogue 'Charity Collectors'

Suprise Birthday Party

Skydive update

Lemar

Operation over

Haircut and Makeover

Richmond, Yorkshire Fundraiser

sitting pretty

Charlotte playing volleyball with her physios

Peter Pan

Brilliant News

Are you up North, wanting to raise some money for Charlotte, have some fun and get fit all at the same time?

Out Of Intensive Care AT LAST

Leaps And Bounds

THANK YOU BROOMFIELD!

The latest update

From Angela, with love...

Get your tickets now!

Great Ormond Street

Bit of a technical hitch

More Sponsors!

Long Distance

Update

Update

Calling all northeners.

Handy Helpers

Come and jump out of a plane...

More pictures from Harrow, saturday 2/09/06

Neeeoooos

Fun and Handcuffs!

A novel approach to fundraising!!!!!

Charlotte-a-tot

Bank holiday weekend update (25-28th Aug 06)

www.charlotterobinson.org

Today

The Great North Run

Sponsored Walk

BBQ Fundraising Event. 2nd September 2006

Acupuncture and Indian head massage.

A few pictures of Charlotte when she was little and oh-so cute

Donations

Over the weekend...

LISTEN UP!: Another fundraiser on the horizon.

Charity Gala Bash at The Birdcage 3rd August 2006