Thursday, November 30, 2006

Suprise Birthday Party

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!!!


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

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.


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.


Thursday, November 23, 2006

Operation over

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


Sunday, November 12, 2006

Haircut and Makeover

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

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]
Richmond Cricket Club
Live Music from Ben and Anth
Gordon Styles
Music for all generations!
Tickets £5
Available from Julia Young 01748 812861 after 6pm
Strictly no alcohol under 18


sitting pretty

Charlotte playing volleyball with her physios

Friday, November 10, 2006

Peter Pan

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.

Wednesday, November 08, 2006

Brilliant News

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

Tuesday, November 07, 2006

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

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 or phone on 07894 802791 or checkout for more info

Thank You All!!!


Sunday, November 05, 2006

Out Of Intensive Care AT LAST

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)