Well firstly the nateosaurus is loads better. They are turning down the % on the humicare and will then reduce the oxygen. He hasn't seemed anywhere near as ill as he was last time with bronchiolitis he's still feeding, playing and smiley. And most importantly hadnt list the strength he has built up since last time! Although caused by a different virus this time.
18/02/11It's hard being in hospital with him away from thea and hard being at home awY from him. Going to bed with an empty cot in the room made me feel like someone had ripped open my stomach and tore everything out! Same again tonight and then it's my turn fir night shift again.
Today I am amazed by my naïveté. I always thought when I saw disabled children that their parents must find things difficult but that there would be help and support for them physically and financially. I gave been shocked by the callousness of the children with disabilities team and housing OT dept. Apparently if you dont have space for your disabled Childs equipment you should just move. Doesn't matter you've given up full time work to care for the child and are financially screwed. And even when they know you desperately need equipment unless you harass the living daylights out of them don't expect to see anything soon. And if you dont ask/ demand help and advice don't expect it to be offered. And don't expect councils to give you a disabled parking space !!!
My friends are all stunned. As was I.
Hmmmm
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