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.....

Monday, 1 November 2010

Monday 27th September.....off to the brompton

Sorry i know its been a while but hey I'm a busy guy :) So today i was woken up by daddy, strange as he is normally at work but hey I'm not complaining. It was earlier than usual and while daddy was giving me my breakfast, mummy was rushing around all over the place grabbing this and packing that. Why is she in such a panic? and why is she packing a bag? Whats daddy done now.... :) Anyway i finish my breakie and mummy is flitting around so much she nearly packs me too. I was too quick to remind her that actually i have my own seat to sit in, ahh now she calms down. Daddy loads up the car with me too, (glad I'm going with them) and off we go. Snooze.....

Back here again, I'm starting to think this is my second home.Were back at the brompton hospital. We get shown up to a ward with a couple other children on there, none my age though :( and that's that. i doze off again, we all know i like a little nap :)

Wow I'm starving now. we have been here hours and iv not had any bot-bot at all. Ill soon change that, SCREAM!!!!!!! Ok its not working they are just bouncing me around, walking up and down and passing me back and forth. Whats going on? I'm not liking this at all! Ok this is getting a bit of a joke now, this lady keeps coming over and strapping something round my arm (blood pressure) and checking my temperature, well hello its going to by high, I'm getting myself all in a tis here.....I'm starving!! A little while later daddy took off my clothes and puts me in what can only be described as a dress...yes a dress!! We go for a little walk downstairs and into a room full of people. Mummy laid me on a bed a looked a little teary :( then this man stuck a mask over my face, i smell a funny smell and......

I wake up in mummies arms my throat is a little sore, i can feel something attached to my face and my hands have been bandaged up, they look like boxing gloves. As i start to come round i can see daddy getting my Creon ready for my bottle, at last. I finish my bot-bot and drift off to sleep.

So this is what apparently happened....

...the funny smell was a gas that put me into a deep sleep. While i was asleep the doctor put a camera down my throat into my lungs to check my airways etc and to see if any nasty bugs were hibernating in there. Quite common in cf apparently, we tend to grow lots of different bacteria which can be rather harmful to us if not treated. After they done this they put a probe in that sat at the top of my stomach. This is connected to a little device that will record if i am refluxing at all. This has to stay in for around 20 hours. This is what i can feel taped to my face. Mummy now has to record the time she starts and finishes feeding me and what time I'm laid down and picked up until they take this thing out.

Daddy had to leave us at night as there is only enough room for one parent to stay with me. He went to stay in a room in a different part of the hospital. I gave mummy a bit of a run for her money tonight, I'm not in my own surroundings, it smells funny and is so noisy. I eventually give in and fall asleep for a few hours.

 I wake up in the morning feeling a little groggy but ok and I'm pleased to say its still back to normal with my milk, no more starving me. Now we are just doing a lot of hanging around waiting for the all clear to remove the probe then its home time. I really wish they would un wrap my hands, I'm getting rather agitated not being able to chew on my fingers. After a bit of wriggling i manage to free a finger :) hahaha you thought you could keep them wrapped up....never!! The nurse gives in and takes of the bandage on one hand, yippee!
Finally the nurse comes over and takes the probe out and takes all the different bandages off me. Daddy gets me dressed and its home wood bound :)

Ethan x

P.S Forgot to say i now weigh 12lb 14oz

see....a dress!!

when i started coming round

with my boxing gloves

finally sleeping

hahaha i have a free hand

on daddy playing with the wire just before we went down

heading for home, with a slightly red cheek

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