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.....

Wednesday 22 September 2010

Wednesday 22nd september......Off to see the nurse...

Today started off like any normal day, woke up had breakfast, played around a little then we headed off out in the car. When I woke up I was faced by Louise, the nurse. I remember her from last time and low and behold she gets my legs out and jabs me in each thigh. Oh my did that hurt, and it made me bleed too. Mummy tried her best to calm me down but for that split second nothing was going to work!! The pain subsided and I got lots of kisses and cuddles from mummy. I nodded off in the car on the way home and am now feeling fine.

The last couple of days I keep falling asleep and waking up in this strange place. Mummy calls it a cot, whatever that is. I don't like it anyway. It's ok to play in, I do like kicking my legs around in it but sleep, wooh no no no I know what I like and that's my lovely snug Moses basket in m&d's bedroom. She keeps trying though bless her but I will not be defeated hahahaha

Ethan x

Saturday 18 September 2010

Friday 17th September, im 12weeks old today....

Well i feel wonderfully refreshed, i feel like iv been asleep for days, not quite sure why though, i don't seem to remember much of yesterday. Oh well, cant be that important aye. Yay off to swimming today, i shall report on my progress later.....

So Frankies daddy came with us today too. He took some good pictures and videos of me in action, ill try and get them up here soon. Met up with Daisy again and once again we was stuck in between the splashers. Mummy how do you always manage it. I'm getting used to this whole dunking thing now. I went under water twice today, AND i didn't cry once, just choked a bit, but i think I'm getting the hang of it. We also all sat in the side this week and kinda jumped in. Well mummy pulled me in and we swam along, was quite fun :) ill be an olympic swimmer before you know it wont i mummy :)

Ciao for now x

PICTURES TO FOLLOW

Thursday 16th September.....a trip to Great Ormond Street...

Today was the day for my lung function test. Daddy has taken the day off work to come with us. When we get there they do all the usual that the Brompton do, weight, height, cough swab etc. I feel like I'm getting fat now, I'm 12lb 3oz. My vests and sleepy suits are getting a tad tight now i must admit, i think i need to go up a size. But ill have that debate with m&d later...back to the hosp....so for some reason mummy had to starve me (only joking but i did need to be ready to feed when i got there) so starving away after being weighed and pulled and tugged i finally get my milk, but whats this, mummy is putting something else in my mouth, ergh thats yucky, aah back to my bottle.....mmmm.....zzzzzz

suddenly mummy wakes me up and I'm back at home being fed again. Hold it.....MUMMY have i missed something?......

Ok so this is what he missed out on....

So at around half one, i fed Ethan. I had to give him a 'sleeping syrup' which just induces a deeper natural sleep. It doesn't knock him out and wont work if he is not tired. He was, and off he drifted. As i was about to hand him over he stirred so i carried on feeding him till he was asleep again. He done this a couple of times until eventually he was long gone. The Doctor there were very good and explained everything as they went along. They basically done a series of different tests, none of which Ethan was aware of nor did it cause him any pain or discomfort. Me on the other hand, well, its not nice seeing your little baby going through it. But hopefully we made the right choice to do this with him.

They attached an oxygen mask to his face which let in a little as for him to breath in. This was all hooked up to computers and machines and they basically was seeing where in the body the gas was going. How they tell all this from squiggly lines i don't know, but then I'm no doctor. Then they tested to see the size of his lungs, again all squiggly lines on the computer from the gas he is breathing. Then they wanted to test to see how deep a breath he could take joined with how quick and hard he could blow it out. Now to one of us we would just be told to breath our really hard into a tube and that measures it, but for a baby not so easy. The oxygen mask somehow made him take the deep breath. Then they strapped a jacket round him with a little plastic bag inside it, this was then connected to another tube. Air was puffed into this to make it inflate which in turn helped Ethan to breath out really quick. Again more squiggly lines on the comp. They did seem very impressed with him, little show off, even when he is asleep :) The final thing was done by a different lady. She shone a black and white checkered light (you will see the funny pic below) over his chest which had cameras either side looking at his lungs. She is trying to determine an easier, less invasive was of measuring the lung capacity, the checkered spots move with his breathing and cameras are measuring different things...i don't know like i said I'm no doctor. Hopefully from comparing her results to the other ones, with a bit of tweaking here and there, they might be able to do some of the measurements this way in the future. So that way, Ethan may have made things easier for babies to come :) I'm sure he will be pleased with himself. That was pretty much it and i should get the results when he goes in for the broncoscopy on the 27th. They seemed pretty pleased with him so fingers crossed all will come back well. They let me take a few pictures to share with you all, the room was dark and i didn't want to use the flash to start with in case it woke him up, so here they are.....


 







all tired out   

He than slept pretty much all evening, just waking to be fed then off to sleep again, bless him must of been tiring for him all that sleeping haha :)

Off to swimming tomorrow if he is ok....Mummy x

Friday 17 September 2010

Saturday 11th September....PARTAAAY!!!

Well today is not only cousin Natalies 30th birthday party, its also grandads birthday too. Mummy, daddy and me get all dressed up for the party and off we go. I met a few more new people too and was quite happy being passed from one to another. They soon know when I'm fed up though, as i start to get grouchy back to mummy and daddy i go. Had a birthday cuddle and dance with gramps and gave him his card, before mummy and auntie getting me ready for bed, giving me my meds and bottle and away i go....zzzz....

Apparently mummy danced the night away with me fast asleep in her arms while daddy and uncle johnny propped up the bar :)

me and mummy and daddy all ready to party

gramps pulling my 'oooo' look




















The next day on the Sunday we all went to see gramps for a birthday lunch, or so we believed. I was the only one that got fed as gramps, nana lot, auntie sarah and uncle kevin were all working in the garden making the decking. I on the other hand stayed inside having cuddles with auntie kelly :)

Friday 10th Sept....my second swimm....

I must admit i was rather looking forward to todays swimming......until i remembered what happened last week...oh yea i know, you all thought i would forget about it but oh no, not me!! Swimming and splishing around as usual and yet again we got stuck in between Daisy and Frankie the splashers. I learnt a new swimming move today with mummy, but then it took a turn for the worst.....mummy dunked me!! yep you heard it right, my mummy stuck my under the water. I guess i was slightly more prepared for it this time but I'm still not overly keen on it. What can i do though aye, I'm just the baby, mummys will do just what they want to do!!

Over and out, E x

Monday 6th September 2010....2nd clinic app at the brompton...

So today a very tired mummy had to get up and get me over to the Brompton this afternoon. Mummys friend Catherine came with us today to help with directions in case we got lost. When we got there i was a little hungry to say the least. They done my usual measurements, weight etc (I'm 11lb 9oz now)and then the lady came to do the cough swab. They need to try and do this before i have anything to eat in case it makes me sick but by now i was starving. So i just screamed. And i screamed a bit more. And to top it off...a little bit more! If I'm not getting my milk then your not getting your cough!! Ahhhh, that's better. While talking to the doctor, mummy explained that i have been a bit snuffly lately. Its true, i have found it a little hard to breath some mornings, so they have decided to change my antibiotics for a few weeks from the yucky pink one to a looovely white one, i like this....can we keep it mummy, pleeeease!! One of the consultants came it to talk about my upcoming events. I have got the lung function test, which as i said earlier this is the voluntary part, but also as part of the routine care i have to have something called a broncoscopy. I think that's something to do with cameras in my lungs but I'm not certain so ill leave that till the day comes. The consultant is going to get the appointments sorted, i guess its better to get them out the way sooner rather than later. I know it seems like i have to go through a lot of different things but to be honest its more painful for mummy and daddy than me, as long as I'm fed ill sleep through anything me :) I don't know any different at the moment, its just life....my life...

Sunday 5th September....Mummy and Auntie Kelly go for a run....

Yep you read that right, mummy, auntie kelly and run in the same sentence!!!

Today i had my first ride on the underground with mummy and auntie and a couple of mummys friends....Catherine, Rachel, Amy and Bec (it took 4 of them to look after me!!). I don't remember much of that as i was doing what i do best and sleeping :) We went to a place called Hyde Park. It was very busy, full of people wearing silly costumes and different funky coloured tshirts. We got there and met some of the people to do with Cystic Fibrosis. Mummy and Auntie had signed up to do a 5k run round Hyde Park to raise some money for the cf charity. Mummys school friend Claire also wanted to raise some money too and signed up as well, we met her here with her family. Now whilst auntie had been to the gym doing her usual classes mummy on the other hand had walked me round the block a few times....good training mum!! However we all had faith! Mummy explained to the girlies how to sort my creon out for my bottle and left us to it as they all went to get their place in the line up. Nanny and Grandad white turnt up now to watch too. So after being fed, changed and back to sleep i hear that they made it round, but I'm too sleepy to wake up....zzzzz....

auntie and mummy ready to go


All in all it took them 48minutes to run/walk round. Well done mummy, auntie and Claire!! Mummys friend Stacy came up to see them cross the finish line with Mike and my buddy Ashley. We then went off so they could all get a little bite to eat before heading home, then it was back on the train and home sweet home. Mummy was a little tired id say hahaha and when daddy came home from work she passed out on the bed and left us boys to it, we decided she deserved the rest!

So far they have raised over £2000 so well done, all us cf'ers really appreciate it :)

xx








Friday 3rd September....hello swimming pool....

Today mummy took me to swimming lessons with her friend Alana and my buddy Frankie. wow its like a huge bath, minus the bubbles. I met a little girl cally Daisy and her daddy too, but being stuck between her and Frankie was a bit 'splashy'. They are both bigger and older than me and they love to splish splash while i just chill in the lovely warm water. We sang a few songs and swam around a little, well got pulled around by mummy, quite relaxing really. Untill....the lady taking the class took me away and dunked me under the water :( i did not like that one bit it scared me slightly, at least mummy was there when i came out. Frankie and Daisy loved it though. I soon got over my tantrum and was back happily doing my splish splash. I quite like this, i think we'll come again mummy :)


me in my 'happy nappy ' ready to splash

29th August....family day at the Burkes


me and auntie Vicky

on the bouncy castle

Today me and m&d went to great Auntie Vicky and Uncle Peters in Kent for my first time at the yearly family get together. I met lots of new people in the family and had lots and lots of cuddles with almost everybody. I think mad Auntie Mavis was a little tipsy, she kept repeating herself hahaha she was very funny. I had my first go on a bouncy castle too with Auntie Vicky. I do like bouncing so i think ill have a bouncy castle for my birthday please daddy, mummy used to have them for her birthdays so its only fair i carry on the tradition :) It was a long day and when we got home i was well and truly ready for beddy byes, i had my milk and off i went......

Dominic and me

cousins...Dominic and eve



auntie Frances and Dominic, auntie Vicky and me

20th August....seiously mummy....more injections.....huh!!


me and my man lewis

they caught me napping

So today i went to see the lovely Louise, well i thought she was lovely to start with. She is the nurse at the doctors. She made mummy take my trousers off and i had 1 injection in each leg. Ouch doesn't even come near and i was sure to let the whole surgery know. It was the most painful thing in iv ever had to go through. please don't say iv ever got to do that again. We went to see mummys friends Amy and Catherine after and my buddy Lewis. All was well until the pain in the legs set in. It was very bad. I know we have to have these but surely there must be a less painful way of doing it. Mummy gave me some lovely calpol and the pain vanished, for now anyway. I was a little grouchy this evening and just wanted lots of cuddles till bedtime, hopefully ill be ok tomorrow,

Ethan x



19th August....my BCG injection :(

Went to a different doctors today to have my bcg injection. Boy did i not like that. Mummy wasn't too keen either, we just stared at each other till the pain went away (by pain i mean the doctor hahaha) it doesn't seem so bad now, i don't know what all mummys fuss was about, she can be such a baby at times. Also had my weight checked again I'm now 10lb 12oz, gained 14oz in 9days, go me :)

big brave me :)

Tuesday 10th August....my 6week check up at the docs....

Just a quick note to say i had mu 6 week check with the doctor. he checked me from head to toe, literally every little crease was unfolded :( I also had my weight done to and now i am 9lb 14oz. What is my mummy feeding me, thats a gain of 8oz in 4days!! well they would moan if i was losing weight aye :)

on our way to the docs
Ethan x

Wednesday 4th August

Oops forgot to say i met my great nanny today. And she really is great :) She was very funny and we had lots of cuddles. Here we are...

Ethan x


Friday 6th August

This morning mummy took me to to be registered. They kept us waiting for what seemed like years and i got a little agitated. However after the longest wait ever we were called in. All that for a whopping 10minutes to ask a couple of questions and for mummy to sign a couple of things. That's it I'm all legal, no hiding me now.

This afternoon me and mummy are off to the Brompton for my first clinic appointment. Grandad Trev is coming with us because mummy is not completely sure how to get there. She will learn one day. So when we get there we are all taken into our own little room. People with CF are not supposed to mix to avoid cross contamination so that's why we all have separate rooms. First of all a lady calls us to go and do my weight etc. Argh, here comes the cold naked bit again.....well in 1week 2days i have put on a huge 1lb 5oz, I'm now 9lb 6oz. I am getting taller too, well longer they say. Anyway back to our little room and we see all the people we saw a couple weeks ago at the induction. They were just checking in to make sure m&d were doing my physio correct and getting on ok with the medicines etc and just altogether to see if we are all getting on ok. They have to take a cough swab from me too, not very nice. The lady sticks like an extra long cotton bud to the back of my throat to tickle my tonsils to make me cough. They then send that off to be analysed to check to see if i have any nasty bugs or bacteria taking up home in my lungs, Luckily however i have not had any 'squatters' so far. Hopefully with the physio and meds we should be able to keep the 'squatters' out.

Today mummy signed me up for a medical study. This is a few extra little tests to try and help the doctors learn a bit more. The first one i will need to have is called a lung function test, we will get the appointment through soon. Joy more prodding and poking but like mummy said, its all extra care for me to check I'm still doing well and if it helps other little babies like me in the future then hey, I'm gain!

All done here, the docs say I'm doing fine and i feel it too.

Ethan x

21st july...off to be weighed

So its been a whole week since i have been weighed and 6days since starting my meds so surly i must of gained some weight. Off we go, i strip off to my bare bum and lay on the scales.....woo hoo I'm now 8lb 1oz. I have gained a whopping 13 or 14lbs. I'm clever enough to know there is 16lbs in an ounce but I'm not sure how you count it as in, 14, 15, 16 8lb, 8,1, 8,2 etc or if the 16thoz is counted as the next lb. I'm not sure if i made any sense there but hey, i know what i mean :) so looks like the meds are working. Ill just give you a little breakdown of what i have to take....
So before every feed i have, i have to have something called Creon (I'm sure mummy will correct me if i get any of it wrong) this is because my pancreas does not work properly. So this is like a man made enzyme that helps to break down all the fats and proteins in my milk. This is what is helping me to gain the weight.
I then have to have some yucky antibiotics called flucloxacillin. This is bright pink and smells yummy but whooo no, its horrid, and i make sure m&d know about it when they give it to me. If its not bad enough anyway, i have to have this twice a day and on an empty stomach too so quite often I'm woken up from my lovely nap to have it. Thanks mummy and daddy. So this just helps to try and keep any nasty bugs away from me, i know it wont always work but Nannyy always says its the nasty stuff that makes you better, so i better have it.
Then i have to have 2 lots of vitamin supplements, just to boost mine up. These are rather yummy, i wish i could have more of these and less of the yucky pink stuff.
Finally m&d have to do physio on me twice a day. Nothing major at the moment just patting me all over to loosen up any mucus on my lungs. I find this a bit uncomfortable but I'm sure ill get used to it.

So that's me so far, Will update you soon,

Ethan x

Thursday 2 September 2010


first night


2days old and boy was i hot

1w1d old. cuddles with mummy

cuddles with daddy, 1w2d

zzzzzzzz

5/7 1w3d
i think my hat is a little bit big mummy