About Me

My photo
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.....

Wednesday 6 February 2013

No news is good news....

Me and my best buddy Nik in the summer
I'm always told no news is good news and in this case that's kind of right. It has been nearly a year since I last checked in, naughty I know but I'm a busy toddler these days. So what's been going on... Well I turned 2 and had a rocking party for that, all my nearest and dearest came to celebrate with me.

Me and my Jessie Woo




Then in August I welcomed my little cousin Jessica into the world. We see each other pretty much every week and chat loads although she's a bit too girlie for me however I'm starting to get her into my cars and trucks now. She mainly likes to chew them but its a step in the right direction. October saw daddies 30th birthday and we could finally let the cat out the bag of his surprise that had been eating me up trying to keep secret for a whole year. Mummy took him to Barcelona for the weekend while I pretty much partied non stop with auntie Sarah and uncle Kevin. Halloween last year I decided on a devil outfit, mummy says that's rather fitting. Whatever that means!
 November I went to my first proper fireworks display, it was the best!! There were rides and candy floss not to mention the huge bonfire. The fireworks were amazing and there was lots of ooing and awwing from the crowds of people. Christmas was fab this year. I was so excited Christmas eve I wanted to sit and watch my stocking all night waiting for Santa to fill it up. I didn't last long though and soon woke up to it overflowing with lovely bits. Mummy and daddy let me empty it all over their bed and play with all the little toys. Then it was business as usual, onto physio, nebuliser, meds and breakfast.... or so I thought. For some reason I couldn't open the living room door but after breakfast, all became clear... Santa didn't only fill up my stocking... our empty Christmas tree was hidden under a mass of presents. WOW!!! Did I have fun opening and playing with everything, and for the first time I wasn't more interested in the wrapping. Daddy had a few days off work so made the most of that then it was all back to normal.

HAPPY NEW YEAR X
New year we spent round auntie Kelly and uncle Johns. Jessie couldn't handle her milk and passed out well early, me on the other hand was like a Duracell battery... no stopping me. Midnight struck and everyone sang some weird song and held hands waving them around, I blame the drink, then we went outside for a tradition of setting off a Chinese lantern. Mummy and daddy always make a special wish letting it go and off it floats way up high and into the distance. We didn't get home till gone 1am but I was still awake before them the next day... lazy parents I tell you!



Daily medication, when healthy
So, health wise since last year I've actually done pretty good. No coughs or colds. Until now that is. I came down with a really nasty cough in December so the hospital gave me a months course of antibiotics. It looked good. Cough started to dry up and I felt on top of the world. Then as I was coming to the end of the months antis the cough returned with a wet spluttery vengeance :( so was put on a 2 week course of Cipro to try and shift it. This is a strong antibiotic and should have made a difference within a couple of days, but it didn't. It didn't help at all. Although my cough swabs from clinic have all been coming back clear, we all know I've had little bouts of that rotten Pseudomonas and can not actually be 100% sure of what is actually going on inside my little lungs, therefore the doctor has decided to admit me to hospital next week (15th Feb) for a 2 week course of iv antibiotics. Having never had this before I don't actually know what this means but when the doctor told mummy at clinic, she cried. So cant be great.

Although I feel fine in myself and to you I look perfectly healthy and happy, that's not actually the case for what's happening inside. There is obviously some little nasty bug that's decided to invite itself into my lungs and set up home. Well I have bad news for this squatter... It's being evicted!!!

Unfortunately, this is just one of those things with having cystic fibrosis. Sometimes we get sick and just need a bit of extra help to get better again. That's my life and there is nothing I can do about that, so until we get a cure, that's something we will just have to deal with.

Mummy is staying in hospital with me and daddy will visit everyday. Once I know a bit more about what is happening I will update. we all know my mummy can be a bit of a wimp at times, so ill do my best to get her through it and hold her hand when things get tough :)

E x



One of the pictures from my recent photo shoot x