bethanys new body suit

Finally bethanys body suit arrived lets hope it gives her some comfort

telling me her face was burning

on the 1st of feb Beth had a good day. She went to nursery and played with all her friends but had a heat reaction again while she was sleeping. she was not too happy and kept waking up saying she felt her face was burning and that it was too hot :( So pleased that her skin is clear we just need to sort these reactions out now. Back to specialist in a week but still nothing from great ormand street :(

fun times

Bethany loved spending the 28th of feb with mummy having loads of cuddles, playing games and taking loads of photos :D x

heat reaction but still smiling

little princess had a heat reaction on the 27th of feb. One minute she was fine and the next her face starting to turn red and itchy and got worse as i was looking at her. poor princess she never seemed too bothered though and still wanted to smile 

more money..

on the 26th of feb I am pleased to say bethanys special body suit is now in the country and at my post office after spending nearly between £40-£50 pounds for it they want a customs fee and handling fee of nearly £16 thats a lot of money for one body suit. The nhs wont pay for it so it looks like i have to come up with loads of money from no where to pay for something my daughter really needs. Bethany is still a happy little chappy and wanted me to take a picture of her "big smile and beautiful skin" her own words. 

happy times

today the 25th of feb i am pleased to say beths skin is still looking amazing shes still having the occasional heat reaction but she is loving telling people shes all better now. its lovely too see her having a big grin and to be proud of the way she looks

burning in her sleep

on the 22nd of fub Bethany had a really good day but at night while she was asleep i noticed her face was starting to burn. she kept stirring in her sleep and did not seem very comfy.