is having a i hate PH day not that i dont have them regulary of course but this weeks been a tough one not sure if its hayfever or crap air quality but ollies been really struggling to breath monday collected from school was struggling then nearly everyday since . very breathless on doing anything but will he rest no way !! not sure if this is a good thing or bad . half of me thinks good because were not giving in and letting this vile disease win the other half thinks but hes exhausting his self and his poor heart but thats i suppose is the question everyone asks ? what makes a good life quality or quantity ? anyway today was a rather poo day as i had a very in depth conversation with ollie no mother should really have to have !! ok you warn your kidsof stranger danger or not crossing the road with out looking or why its not a great idea to climb on the garage roof or use the computer in the bath but to have to try and explain why its so important ollie tells people how he feels at all times because little things could mean hes in heart failure and why running around to the point he cant talk as so breathless isnt such a great idea . hes 9 he doesnt want to have to be stuck with his mum and the next few years are going to be hard as he ventures out and gains the confidence andindependence his brother has without mum stood behind him and the older ollie gets the more likely hood of getting a donor another thing i really dont want to think about . on the plus side of all this though is he is looking more handsome everyday and hes cheeky charming and really rather intelligent and a pleasure to be around and we have fun and thats another reason i hate ph is because you can forget its there and living inside him progressing and its hard when hes poorly as you forget the seriousness of PH and how vile it is . Great ormond street visit is fastly approaching i suppose this is my other reason for thinking and im sorry if i have offended or bored anyone with posting this but just thinking aloud and it helps because even if no one does care its out there in the air and hopefully doing some good
Posted on: Thu, 26 Jun 2014 22:58:44 +0000