beths looking amazing

(30/6/2013) Bethany is very happy to be home  and looking amazing unfortunately the weather is very hot so we will have to wait and see how she goes. bethany has a new jam packed medication chart 

unfortunatly i spoke to soon about bethany later that day she started burning pretty badly due to the heat. Beths was still burnt really bad tonight. Lucky she has her cousin, brother and friend taking her mind of it.  its just too hot even the fan is making no difference for her  now just got to sit back and watch her burn as there is nothing more I can do  so sad

little princess ready to go home

(28/6/2013) Little princess is all ready to go home. She still has some problem areas and wanted to keep her the weekend too but have agreed that I can take her home as long as I medicate her as told which I always do. They are hoping that the azathioprine kicks in very soon so we are not a monthly visitor to the ward but only time can tell. 

not working as well as hoped

(26/6/2014) Betany has seen the doctor this morning and have said the wet wraps have not worked as well as they was hoping to this point as some of her skin is still so dry. Bethany is really feeling sorry for herself and is very upset today. She has managed to give a little smile to all her supporters even though she is in a lot of pain later that night she burnt rore due to the heat of the ward.

wet wrap treatment here we come

(24/6/2013) Off back to great ormond street today till friday for wet wrap treatment. Hope your all well x

later that day bethany Seen the doctor they are wet wrapping bethany continuously till friday using four different creams as her skin is bad very dry and all cut up x she is happy too see all her friends from last time

bethays nursery called

(19/6/2013) Have just had a phone call from Bethany's nursery saying she has a temperature of over 38. They went to cream her and she felt burning to touch so they took her temperature and that was the outcome. Off to the doctors we go  poor princess.

very bad night

(18/6/2013) Had a very bad night with my little princess last nite she was just so itchy and uncomfortable that she was screaming un till 1 am. 

wants to say thank you for donating money for bethany

(16/6/2013) Is pleased to say Bethany has not been to bad the last couple of days due to it being cold outside. So she has not been so itchy and her scars are starting too heal. i also want to say a massive thank you to the provincial grand lodge of mark master masons of surrey for donating £100 for me to buy the stuff that Bethany needs.

skin is flaking and falling off

(10/6/2013) Beths skin is so dry its flaking and falling off she is covered in it  she has cuts still all down her arms and feet and her chin the weather is nice and windy today and that is good for us 

bethany is being re admitted

Had a phone call from great ormand street bethany is being admitted from the 24th till the 28th of this month if they have any cancellations bethany's addmition will be brought forward. Hope everyone is well xx lots of love me and bethany xxx

happy princess

(6/6/2013) Her skin is still looking very sore but I have a happy little princess for the moment.  i also Spoke to great ormand street again today after they recieved the pictures I emailed they agree its bad and have faxed my gp a prescription for me to pick up in the morning with some different creams and they are thinking of re admitting her I the next couple of weeks for wet wrap treatment again as she is just such a complex child they think due to her immunity problems shes getting immunity to the medication so quick not giving it a chance to work just a wait game now lets hope something gives her a little relief hope everyones well xxxx

waiting for advice from great ormond street

(5/6/2013) Bethany is so so sore and in such a bad way I have phoned great ormand street for advice just waiting on them to return my call

later that day..

Great ormand street want bethany put back on antibiotics by the gp who I have an appointment for at half 4 and when I have seen the gp I need to ring them back for them to make a decision with what to do. Nursery have said that she has been so itchy that she has had her body suit with the mittens on today

cut up all her hands and arms

(4/6/2013) Bethany has been so itchy the last couple of days due to the heat and the uv rays her body, feet, arms and hands are all cut up bad times

the weather is warming up

(31/5/2014) Has a poorly little princess this afternoon its warming up so she is burning and getting very itchy, dry and agitated but is still trying to have fun with her little friends. Xx

blood tests really upset my princess

(29/5/2013) Beth has had her bloods and screamed so loudly and was so upset that the staff felt so bad just got to wait for the results hope your all well xxx.

changes too quickly

(28/5/2013) I am pleased to say the weather has been terrible today which has been great for my little princess  lots of happiness and smiles today off for another blood test tomorrow to see how the new medication is working in her system hopefully all positive and good 

later that day.....

Spoke too soon. Its 11.50pm and beth is still up screaming and scratching and has taken her suit of and made herself bleed just had to re medicate her, smother her in cream and put a clean suit back on. Poor princess. Wonder what time we will get to sleep tonight. Its not looking promising

very upset and tearful

(26/5/2013) Bethany has had such a bad day due to the heat  and also Has one very poorly little princess tonight . Shes had a really bad heat reaction and is covered head too toe in a rash. She has cut herself on her hands, feet and stomach where she is just so itchy she is in lots of pain and very upset and tearful 

rashy and itchy

(23/5/2013) has a very rashy and itchy little princess today

Bethany is now on an immunity suppressant drug

(22/5/2013) Seen her specialist she has agreed its the right thing to do to put beth on azathioprine she starts today its not a cure but will hopefully make things more manageable. The effects wont start happening till about 12 weeks after she has been on the medication. After she has been on the medication two years they will see if she needs to go on it for longer or not. Bethany will have regular blood test one next week then two weeks after that if there is nothing wrong with her bloods then three weeks after that and then every month. Hopefully this will help only time will tell  xxx

its been manic

(21/5/2013) Hey everyone sorry for not updating you in a while me and both the little ones health has been really bad. I have made a decision to accept the immune system drug they they have offered Bethany  We are back off to great ormond street tomorrow for her to start on the drug. Luckily the weather has been very good to us and hasn't been hot enough for Bethany to burn but she is still very itchy and really doesn't like her new medications its just a daily struggle. Hope your all well and sorry again for not posting on here sooner. Will keep you all updated about how it goes tomorrow 

when will bethany ever get a break

(14/5/2013) Back to the emergency doctors this evening beth was having trouble breathing she has now been diagnosed with a chest infection as well as the bug she already has and the lumps on her legs and rash down her body. Her skin is so itchy and drying out so quickly she has some marks on her hands and feet again  in three days bethany has been put on 5 different medications as well as all the ones she already on . She never gets a break poor princess

doctors again!

(13/5/2013) Been to the gp he was lovely he thinks bethany may have caught a bug from when she was in hospital and was concerned has asked for a stool sample asap asked me to do specific creams in specific areas and to put her on more antihistamine and if its not gone by Thursday to go back as an emergency appointment to see him as she will need to go on oral steriods x

lumps have magically appeared

(12/5/2013) Beth has been great up untill this morning when I noticed lumps on her legs and over the day she got worse a rash from neck down to her feet and these lumps spreading. Taken her to the emergency doctors who have said bethany has been bitten by something poisonous which is why she has all these lumps and this rash and has told me to stop all her medication given from great ormand street as it will irritate her and to just use what she has prescribed. This is just never ending one thing after the other for my poor princess  

unfortunately off home today with no answers

(7/5/2013) Bethany wearing her new great ormand street hoodie  she loves it but on a different note We are off home today. Unfortunately didnt get any answers as I was hoping. Beth has been wet wrapped the whole time so her skin in great they have given me two weeks to decide weather or not I want to put bethany on the innune system drug as there are many pros and cons. Bethany has had this treatment before and in a week she is bad again. So unfortunately being in hospital has only sorted the problem short term as you can tell as she was burnt red rore in the car on the way home. lifes just not fair

princess is smiling

(4/5/2013) princess wanted to show you all that she is still smiling

today is the day

(3/5/2013) finally we are here at great ormond street we have been waiting such a long time for some sort of answers and help and this is our chance fingers crossed everyone. Bethany hates the treatment and is very emotional due to this all but she will hopefully thank us when she is feeling better. Bethany burnt so badly that night due to the heat of the ward she had fans on her all night and after a couple of hours it went down

only have to wait till tomorrow

(2/5/2013) Reality is kicking in been packing for great ormand street as we go tomorrow till Tuesday  Finally we are going a step in the right direction and fingers crossed we get some answers we have been waiting so long for this day and its nearly here :):):):)

the sun is out

(1/5/2013) Bethany is very burnt due to the sun being out and she is so sore and itchy great ormond street appointment needs to hurry up she really needs some help friday really couldnt come quick enough

Bethany is in a better mood today

(30/4/2013) Me and my little princess bethany  she is in a better mood today x

managed to get an emergency appointment

(29/4/2014) Managed to get an emergency appointment for Bethany with her dermatologist today. He has changed her creams to something that wont sting her and has said that great ormand street will make the final decision on friday but what he has changed will hopefully help and get her comfortable untill then 

i feel useless

(28/4/2013) sad times most of her body is in pieces i feel useless

so many cuts her creams are stinging her

(27/4/2013) Unfortunately bethany has so much broken skin, deep cuts and big amounts of skin missing that she is now having a reaction to some of her creams telling me its stinging her  when will life get easier for my poorly princess

getting so upset roll on great ormond street

(26/4/2013) Bethany is still very itchy its so upsetting as she is hurting herself more. she begs me to scratch it and gets so upset. Roll on great ormand street she is just getting worse 

has such a sore little princess today

(25/4/2013) has a very sore little princess today

cuts are back from itching so much

(24/4/2013) Bethany has been so itchy that she has cuts all up the side of her face, legs, feet, arms and hands but still keeps smiling. Unfortunately bethany is so itchy we are having to peel her hands away from her. She has torn herself apart and is continuously telling me she is itchy and crying. At nursery she told her teacher that it was stinging her and she was very upset. My poor baby going to be another long night like last nite and one full of cream, bodysuits, bandages and wet wraps

finally heard from great ormond street yay

(23/4/2013) hello everyone. finally have heard from great ormand street and a date has been set she will be going in hospital from the 3rd of may till the 7th of may. bethany has scars and scabs on her face where she has been scratching so much. now its really hot aswell it doesnt help. not long now  xx

the pain was so bad bethany

(15/4/2013) Bethany had a very bad night last night she was so so itchy she was fully wet wrapped i was having to tear her hands away from the blood on her body  she was in that much pain she had asked me to cream her and wet wrap her and beth never asks x hope everyones well

tearing herself apart

(19/4/2013) unfortunately beths skin yesterday was very bad and very blotchy, red and raised for the whole day yesterday and she was tearing herself apart. sooo itchy bless her. wish i could take away her pain

picture for all Bethany's supporters

(17/4/2013) Pretty princess wanted me to take a picture for you all to say hello to all her supporters

burnt but gorgeous as ever

(16/4/2013) here is a picture of my beautiful princess unfortunately she is very burnt but still as gorgeous as ever 

the pain was so bad Bethany asked to be medicated

(15/4/2013) Bethany had a very bad night last night she was so so itchy she was fully wet wrapped i was having to tear her hands away from the blood on her body  she was in that much pain she had asked me to cream her and wet wrap her and beth never asks x hope everyones well

bad night and in wet wraps

(14/4/2013) hello everyone Bethany has been a bad state tonight. She has torn herself to shreds,is very itchy and is in pain. She is in wet wraps and it was a major argument to cream her and get the bandages on her but i managed it. my poor baby. wish there was something i could do to give her comfort. thats down to great ormand street lets hope they get back to me asap.  lots of love too you all

its been very challenging

(13/4/2013) Bethany has been very up and down recently her skin is so dry even with all the creams and medication that its just falling off. She has tore her head open and has scars and scabs all over her head. Bethany is currently going through a stage where she does not like to be creamed or medicated and it has made things very challenging. Still not heard from great ormond street I will be calling them on Monday . I am currently appealing against the dla decision of giving Bethany low rate care allowance.

ups and downs and bad reactions

(9/4/2013) The last couple of days bethany has had her ups and downs she has cuts all up her feet and has had some bad reactions too her skin.unfortunatly I don't have a camera at the moment as my phone is in for repair. still waiting to hear when bethany is going to be admitted to great ormand street hospital hope everyone is well x

bethany with mummy

(6/4/2013) Bethany with mummy before her family outing looking gorgeous as always. Just hope the weather cools down for Bethany's skin 

burnt badly while playing with her friend

(4/4/2013)

Bethany was having so much friend playing with her friend at a play centre but burnt so badly :( so sad