About Me

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Well I entered the world on 25th June 2010, the day after mummys birthday. That picture up there was one of the first daddy took of me. We were all fine and was home the next day. As I am now at 9weeks, I love being in my swing, on my play gym or in the bath kicking my legs around (ready for daddy to take me footie) I'm quite the dribbler!! I do love cuddles though :) I do have my screaming fits, excersising the lungs, I get passed from mummy to daddy then back to mummy till eventually I fall asleep, bouncing me does wonders. So I'm pretty much the same as every other 9week old on the block, only difference is I have Cystic Fibrosis. I will get mummy to explain it as best she can for you and will try to keep you as up to date with everything as we can. So here is my story.....

Thursday, 23 January 2014

Update from January's joint clinic...

Well.... Bad news, my weight has dropped slightly still I'm now 15.6kg but docs really don't seem to fussed about that. My cough however is still here and not very nice. They have decided to put me on yet another antibiotic for 1 month called Septrin. Docs have said I need to make a significant improvement within 2 weeks or I may need a bronchoscopy. This is where they put me into a deep sleep and put a camera into my lungys to see exactly what's going on and maybe give them a little clean. Depending on the outcome of that depends on the next step.

So a week and a half into the Septrin and mumsie says my cough is drying up and even I can tell I'm definitely not coughing as much. So she tells the doc that it's all going in the right direction. YAY :) However, by the week after I'm coughing bad again. Really bad. I'm coughing up green gunk which is yucky and it's even making me cough in my sleep.

So today is Thursday 23rd Jan and tomorrow we are going to centre parcs for the weekend. Today mum has spoken with the consultant at whipps and she is thinking I will need to go in for IVs again :( this really upset mummy as it makes everything all seem real again. Reality kicks in. 

BUT, they are letting me go away for the weekend and see how I am when I get back and decide what to do then. Hopefully they will do the bronch first and actually see what's going on before taking me in for the IVs. 

Fingers crossed all the running around, fresh air and exercise will pay off and help shift this cough...

Roll on centre parcs :)

E x

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