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.