Charlotte Robinson: September 2006

Bit of a technical hitch

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!

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

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

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

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

Calling all northeners.

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

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...

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

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

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!

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

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!!!!!

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!