Thank you every one,just hearing all your words of wisdom have really made me choke up,I feel finally I am getting real life answers and not just the professional jargon the cf team give out.dont get me wrong they are great!!
Lilly is attending Limerick Regional, Dr Lenane from crumlin is joining the team in January ,im doing a fundraiser to buy him a paediatric broncholscope as apparently he is one of few docs who can preform this and HSE wont fund it,I have a signed golf club from Padraig Harrington along with other stuff so we will hold an auction night?ideas??
My cuz Ciara has cf and she is 26 so im following her progress with an eagle eye.She is doing great thank god and looks fabs.
Lilly had psuedo barters syndrome which is very rare but is cf related ,so we are just getting over that,she is only 6 months but it feels like an eternity ,so much has happened in such a short period.
she is great now thank god long may it last fingers and toes crossed
I have loads of questions but i think i've written enough now and she has just woken up so i'll get back to ye a little later,
thanks again to all of you for suppport i have a sneaky feeling this forum is going to my life line