Well today is the 19th of feb and 3.23am , I am laid in a camp bed on the children’s ward, Archie my 5 yr old SWAN ( syndromes without a name) has got the vomit bug, in his short life so far we have been in and out of this place so many times I think I could be the doctor. You see children like Archie are not text book they baffle even the best of medics, but still nurses no best. Archie was last in this wonderful hotel a year ago in march and I promised myself then that I am better of at home. But today was just different I really thought we had turned a corner with the maturity of his immune system but I guess not, I ? Myself could it be that he is now doing 1 morning a week mainstream school and 1 evening after school in mainstream child care and also mainstream childcare in holidays 1 day a week, so is now mixing with the stereo typical children and all the special children too so double bugs flying around. Hospital stays well what can I say I HAVEN’T BLOODY MISSED YOU I TELL YOU THAT MUCH. The nurse’s talking all night and giggling away,the lights on, then the poor babies and toddlers crying, because they just want to sleep but the nurses won’t let them. Archie is asleep now and hopefully will stay that way however me on the other hand forgot my own painkillers and got a screaming baby young baby at that, to listen too and all I want to do is go over to the mother and give her a break as I no far too well what it’s like when your child can’t tell you what’s wrong. You see Archie has, now brace yourself as I have never wrote this all down together:
Macrocephaly, hypotonia, club foot, high arched palate, feeding difficulties at birth, milk,gluten and wheat intolerance up until 2 years ago, cerebral visual impairment, is non verbal, complex learning difficulties, complex global development, eats excessively and drinks alot too so possibility this is called P.I.C.A, small statue, small hands and feet, sensory issues the list is endless and could go on and one never sleeps unless poorly.
So my blog tonight is just about the one night I have had in hospital I am sure there will be many more xxxxxx good night god bless you all xx. X
When life gives you something alittle different 
Oh, Patsu, how I feel for you. We have turned that. Orner, but whe I read it feels it was yesterday. End less nights at the hospital and always feeling if the doctors knew what they were doing, telling the story to each doctor and seeing in their eyes that they felt they knew better while I knew they din’t have a clue, a SWAN is a special person and normal things like a cold is not a normal thing for a SWAN. Good luck and don’t let them get to you. You wll go round that corner and the hospitalisations will be less and less …
hello karina thank you for your lovely comment , they are starting to be less and less theses days just frustrates me xxxx
Sorry about grammar … It is difficult with the iPad ….
We had a trip to the local hospital after a good 2 years staying away (although admittedly in that 2 years we were in GOSH for 8 months). We were admitted again a couple of weekends ago and I forgot how depressing it is. It brought back all the loneliness, noise and heat… oh my god the heat! I really hope you’re home now and he’s feeling better, I much prefer being in the specialist hospitals, even though even they aren’t the nicest of places!