Friday 19th November......things are never quite what they seem....

I had quite a bad night last night. Had a bit of a temperature and a little cough. Daddy gave me some nurofen throughout the night and helped me to sleep a little better. When mummy got me in the morning I felt a slightly worse and sounded a little 'horse' as mummy puts it. We had breakfast as usual but I didn't really want my bottle. My teeth were hurting, I had quite a nasty cough and because of that I had a really sore throat. My temperature started to rise so mummy gave the hospital a call. She spoke to the registrar who said to change my antibiotics over for the cough and to go to my doctors just to get checked out. A few minutes later the phone rang, its Jackie, one of my specialists from the hospital. Unfortunately she was the barer of bad news......

When we go to clinic I have to do a cough swab. Basically they tickle my tonsils with a big cotton bud to make me cough and if I have any nasties in my lungs it will show up in here when it's sent to the lab. Mine has come back positive, for pseudomonas. At the moment I know it's bad just not sure how bad, the Internet kinda confuses me a bit so try not to read too much on there. I need to have a different medicine called Ciprofloxacin twice a day for 3 weeks. I also need to go into hospital next week to get something called a nebuliser. I think this is like a gas mask where i breath in medicine. I will need to use this for at least 3months now, maybe more. Not sure if I'm going to like this. So that explains why I have been feeling a little off lately. I guess this means that the cf has really kicked in now :( 4 months of good health is not bad.

It's Sunday now and I'm feeling worse than ever. My voice is all croaky and throat is very sore. My cough seems to be getting worse. But iv only had 2 lots of the new medicine so far. I guess I have to give it time to start working. I wake up several times in the night coughing and m&d give me some water to try and help, it does for a while but not for long. I can tell that mummy and daddy are worrying but I'm a fighter and I'm going to see this nasty bug off in no time, you see.

We have not had a very good month in the white household, but after Mondays excellent clinic report we thought things were about to change. Just didn't expect them to change for the worse.....

Will keep you posted when i can,

Ethan x

Tuesday 16th November.....swimming update.....

So last week was my final lesson in beginners :) and today our first intermediate lesson. We have had to change pools and so change days too. I don't mind though. We still have the lovely Kate as our instructor, she is fab. We learnt a new swimming position today, kind of a front crawl :). Mummy now comes under water with me and watches me swim. Frankie and I are becoming quite the professionals even if I do say so myself. I started off ok but to be honest I'm not feeling too great today so we sit out towards the end and watch frankie.

Daddy was off work today as he had some trouble with his van last night so was great waking up to him and going home to him, gave me my lunch and had lovely cuddles :)

Ethan x

Monday 15th November.......off to clinic....

So today mummy and I went off to the Brompton for our clinic appointment. I now weigh 15lb 8oz and i am 64.37cms tall. We saw the dietician who is very pleased with my weight gain so all this yummy food I'm having must be doing me good. We saw professor Bush today, he is very nice and wears funny coloured beads round his neck. I tried my hardest to grab them and put them in my mouth but mummy kept stopping me. Anyway he checked me over head to toe and believe it or not said I am In eceptionally good health, chest was dry an clear, oxygen saturations 100% for the first time ever tummy felt good and overall very pleased with me....GO ME!! unfortunately for me however as I'm becoming a big strong boy my yucky medicine has to be increased with my weight :( not the best news for me but hey, I'll swallow what I want and spit the rest out when m&d not looking hahaha, naughty I know but believe me, if you had to have it you would spit it out too!!

That's all for today, Ethan x

Fireworks party....

So Friday was my first fireworks night...and how great it was. Grandad and Nana Lot had a 'small' gathering that soon turned into about 37 i think auntie Kelly worked out. There was my aunties, uncles, great aunts and uncles and my other Grandad and Nana Carol and plenty more who i have no idea about, I'm sure gramps must know them, i hope so anyway. After a little while gramps went to the end of the garden to start all the pretties....WOW!! they are loooovely :) i was truly mesmerised. Its a shame they had to end. Mummy took me upstairs to get me ready for bed and we watched a few more out the window before daddy tucked me in to my bed that gramps bought me. I woke up to put my coat on but was soon back to sleep in my cot, ahhh.....

After M&D starting me on some yummy food as well as milk, my trousers seem to be getting a little on the tight side round the belly area. Mummy took me to get weighed.....15lb 3oz, Iv put on over 1lb in 2weeks, that's the biggest gain in such a short time i think. At this rate the nurses wont be saying a high calorie diet is whats needed, they will be putting me on rabbit food!!

Not such a good time at swimming this week. Typical as its the first time i have a spectator....auntie Kelly. I was very uncomfortable and just didn't want to play ball. I done a bit of swimming but spent most of it having cuddles with mummy while auntie turnt into paparazzi. It wasn't until after mummy had got me dressed and Frankies daddy was looking after me that he noticed that my top two teeth are coming through. Hooray, someone noticed....now you know why I'm not in the mood for swimming. To be fair every time mummy tries to look at my gums i poke my tongue out and move my lips so its no wonder she didn't notice. I thought i was being funny but turns out if i had let her see, i would of got something to help with the pain, silly me.

Oh well, nothing else to report on.....

Ethan x

p.s I PROMISE pictures will follow of swimming this time as auntie was there and she never goes anywhere without a camera, especially when I'm around :) x

A trip to the nurse....

Before i start, just to let you know i have added new pictures to the page...pics of me and all sorts!!

Well I'm pleased to say my horrible cold has cleared up lovely but I'm still having the yummy medicine. They like to keep them going for 4 weeks to be sure. Hey I'm not complaining! Today however we had a trip to see the nurse. Every time i see her she hurts me and low and behold, today is no different. well there was one difference.....it was buy 2 get one free. She jabbed me 3 times in my legs....OUCH!!!! I settled down after a minute or so and enjoyed lots of big cuddles with mummy. Tonight however has been a bit different, its made me feel all funny and i dont like it. After a spat of crying and some yummy calpol i doze off to sleep and feel slightly better when i woke up an hour later. Daddy gives me my favourite sweet potato for dinner followed by my meds for dessert, mummy give me a lovely bath then back to daddy for my bottle and I'm now off to bed, slightly later than my usual bedtime but i was a brave boy today so you have to let me off :)

Night all x

Monday 25th October.....4 months old....

I'm 4 months old today and after speaking with the dietitian mummy has decided to give me some other food that's not milk. Its yummy :) I have had baby rice and all sorts of fruits and vegetables. My overall favourite is sweet potato, i love that. We make a bit of a mess but hey that's part of the fun.

"have i got something on my face?"

I forgot to mention, a couple of weeks ago Katie (my cf nurse from brompton) came round to check up on us and help mummy fill out some forms. She had the results of my bronchoscopy. ALL CLEAR. There was no mucus or secretions, my airways were clear and when they sent the washings off to the lab, nothing grew. Great news, for now anyway. She didn't have the results of the ph study (the probe to check for reflux) on her and called the next day. Apparently i am refluxing and quite a lot too, not that i knew it. So that's another 2 different medicines to add to the list. I don't know how mummy keeps up with it all...

Ethan x

Wednesday 20th October.....still full of cold....

Last night i slept a whole lot. Think mummy was a bit worried as i slept from 7pm till 9am. I missed out a bottle completely but i had no energy and all i wanted to do was sleep it off. I have woken up today still really snuffly and coughing but a little more energy and hungry too. Hopefully the antibiotics will kick in soon and ill start to feel a whole lot better.

My swimming is coming on really well now too. We do lots of underwater swims and mummy now lets go of me. It was a bit scary the first time but now I'm becoming a bit of a pro :) i kick my legs, wiggle my bum and wave my arms all underwater, and i do it with my eyes open too. Not even mummy does that!

Also i got weighed on Monday at clinic and I'm exactly 14lb, one whole stone!!

Ciao for now,

Ethan x

Tuesday 19th October.....Iv got a cold...

Today i woke up and my nose was really blocked up and i was having trouble breathing and was coughing alot. Mummy panicked a bit but after she got me up and we was moving around, it cleared and i could breath but was still coughing :( I heard mummy on the phone to the hospital and they are going to change my antibiotics again. I hope its the yummy one. I'm feeling very sorry for myself today and all i want is lots of cuddles. We go to get the meds and it is the same yummy one i had before. Its kinda taken it out of me today so am going to have an early night....

Ethan x

Monday 4th October.....Change of meds

For the last few weeks i have been having a different antibiotic as i have had a bit of the snuffles. So to make sure it didn't get to my chest the docs changed it over to a much nicer one. On a good note the cold cleared up but on the downside I'm now back to the yucky antibiotics. I have learnt a little trick though. When mummy or daddy squirt a little bit in they wait for me to swallow it before putting another bit in. If i hold it in my mouth long enough they get bored of watching me and the second they turn their head i spit it out. Hah!! Its bright pink, sticky and stains my clothes but at least i don't have to swallow it. They have however since cottoned on to this and barely take their eyes off me, and tilt my head right back to try and stop me. I do have to swallow most of it but still manage to spit some out.

Its daddy's birthday on Wednesday and i got him a little present, a spurs shirt that i thought he would look really good in. His first birthday as a daddy :) hope he has a lovely day. HAPPY BIRTHDAY DADDY xx

Ethan x

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

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

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

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

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

Thursday 22nd July....Off to Brompton...

Early start today....

its a hard day...

Last week when we went it took us 2hours to get there and that was midday. Today we need to be there for 10.30am, right in rush hour!! As we are staying the night there Grandad Bish is taking us and Grandad White will pick us up tomorrow. 7am gramps arrives. Mummy has just finished feeding me and daddy is now getting me dressed while mummy makes sure we have everything we need, its mainly my stuff. Mummy and gramps load the car up and 7.30 we're off. And so am i, off to sleep. I know i didn't wake up long ago but its tiring being this gorgeous hahaha ;) We arrive in plenty of time, about 9.30 so me and m & d wave off gramps and we go to the hospital cafe so they can have breakie. My time here is very exciting, i eat, have a poop and a wee then i snooze a little. Then i feel hungry again, but with all these different people coming in and out i don't think mummy has realised....Ill give her a nudge and scream.... that's pretty much how my 2 days go....

after a long day, me and daddy pass out...

We met lots of different people.  Firstly Katie, our cf nurse for the 2days. She pops in and out after everyone making sure we, i mean mummy and daddy, understand it all. She is very nice and explains alot about cf. So we met the dietitian who explains all about the digestive system part of cf. Because my pancreas doesn't produce the enzymes to break down and store the fat and protein in food, i will need to have something call Creon before anything i eat. Its ok, its like gravy granules. Mummy is told to give it to me with a little teeny tiny bit of apple puree, it goes down a treat. I start taking it today. As i start eating more, mummy and daddy will have to give me more. At least now, i should be storing all the fats and should start to gain a little weight steadily. Next we see the physiotherapist. She explains all about the 'tapping' on my chest m & d will need to do. I don't like this, it doesn't hurt, its just boring and a bit uncomfortable. I have to have this done for 15minutes, twice a day. We see the consultant, not sure what his role was. He just done alot of talking about the condition in general. As we started later today (not till about 11.30) that's all so we are left to ourselves for the evening. We watch a bit of tv then head off to the high street to find somewhere for m&d to have something to eat. I have had a long day so sleep the whole time, gave them a bit of time together. Then its back to the hospital to settle down for the night.....

snooze...

The next day we see all the same people, recapping yesterday and seeing how the Creon and physio went. I think m&d done a fab job. Didn't even realise they done the physio, think they done it in my sleep. We also saw a lady about the different benefits m&d can claim. Things like the congestion charge can be claimed back, every little helps. She will be there to help with things like disability living allowance etc. Then we saw a councillor. She offers support on our blue days and gives encouragement when you feel down. Lastly we say the pharmacist. He came in with what looked like a big bag of sweeties....how wrong could i be. He explained all about the medication i would need, starting today, and how it would change over time. So not only do i have the Creon and physio, i have to have antibiotics twice a day and 2 different vitamin supplements once a day. They show m&d how much and how to do it all now.....YUCK!!!!! These antibiotics are horrid :( the vitamins are quite tasty though. Oh well its just something iv got to put up with now.

Its 3o'clock now and we are all done and gramps white is ready and waiting to take us home.

Mummy and daddy go at it alone.....

That evening it was time for my yummy (joke) antibiotics and physio. This certainly is going to take some getting used to. But thats life....

Wednesday 21st July....back to see Sue for a weight check

8 days after the last weighin....

So 8 days ago i was exactly 7lb. Mummy has been feeding me up good and proper, she will not be happy if i havent gained any weight. Here comes the dreaded cold plastic bowl on my naked tooshie.....WOOHOO gained 4oz, half an oz a day :) 1 more oz and im back to my birth weight. Sue said she could sign us off to the health visitor but mummy likes coming here so we are going to come for 1 more week. We are all off to Brompton tomorrow for m & d's training. Wonder who we will meet...

Thursday 15th July....First time at Brompton...

Off for the sweat test....

cuddles with daddy before we set off

I'm back....so me, mummy and daddy go for a long drive to South London. I was a good boy and slept the whole way. I woke up when we arrived and I must say, it's very posh. Dosen't look like a hospital at all, until you get to the rooms or wards of course. We was met by a lovely lady called Jackie. Like Pat she is one of the specialist nurses there, along with Katie and Vikki...we meet them later. Jackie attached a little device to my arm for a few minutes to make it hot and sweaty, this was quite uncomfortable and i did cry....just a little though. Then she took that off and strapped something else round it to draw in the sweat. She then done the same to the other arm. I was a bit fed up by now so I thought I would let them know with a screaming fit. The little thing that takes in the sweat stayed on for about half an hour, this was fine, didnt really feel it. This was lunch time for me anyway so I was happy. Jackie then took it all to the lab to investigate and after about half an hour she was back with the results. M & D was prepared for the answer, of course it came back posative...I have got cystic fibrosis :( They all had a little chat about what happens next, I was slowly nodding off, still feeding :) We are to come back next week for 2 days so m & d can have their 'training' and start me on the meds....

Wednesday 14th July....The day our lives changed for good....

This was me 2days ago, 2weeks 3days old....

...loving the hat mum!!

Daddy went back to work yesterday :( but I'm looking after mummy, she is doing a great job. About 11o'clock the phone rings. I hear mummy say hello Elizabeth. Elizabeth is our health visitor. I think she takes over our care once Sue signs us off. I'm guessing she is coming to see us as mummy ends the conversation with 'see you later'. I have to guess this stuff because mummy never tells me, I mean why would she...I'm only her son!! Mummy then rings Daddy to tell him. Again I'm guessing here, but I think daddy is coming home early. I wonder whats going on.....yawn......

I wake up from a lovely sleep to see Elizabeth staring down at me....argh.....how long has she been watching me!!! Ahh theres daddy...he looks sad.....mummy is crying....what has happened, I'm the one that is supposed to do the crying!!

I'll pass you over to mummy now as I get a little confused....

Well Elizabeth came with a lovely lady called Pat. Pat is a nurse at the Royal Brompton hospital. After a few minutes chit chat Pat begins to explain why she is here. It is 2 weeks to the day since Ethan had the heel prick (blood taken from his foot for tests) and something had shown up....that he has Cystic Fibrosis. Now like most people we just said oh ok, whats that. We knew nothing about it at all. Pat is a specialist nurse trained in cf, hence why she came. She explained as best she could but we done most of our leeaning over the next couple of weeks.

What is Cystic Fibrosis....

CF, is an inherited disease of your secretory glands, including the glands that make mucus and sweat. "Inherited" means that the disease is passed through the genes from parents to children. People who have CF inherit two faulty CF genes—one from each parent. The parents likely don't have the disease themselves. CF mostly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs.

Mucus is a substance made by the lining of some body tissues. Normally, mucus is a slippery, watery substance. It keeps the linings of certain organs moist and prevents them from drying out or getting infected. However, if you have CF, your mucus becomes thick and sticky. The mucus builds up in your lungs and blocks your airways. The buildup of mucus makes it easy for bacteria to grow. This leads to repeated, serious lung infections. Over time, these infections can severely damage your lungs.

The thick, sticky mucus also can block tubes, or ducts, in your pancreas. As a result, the digestive enzymes that your pancreas makes can't reach your small intestine. These enzymes help break down the food that you eat. Without them, your intestines can't fully absorb fats and proteins (hence the weight problems to start) This can cause vitamin deficiency and malnutrition because nutrients leave your body unused.

CF also causes your sweat to become very salty. As a result, your body loses large amounts of salt when you sweat. This can upset the balance of minerals in your blood and cause a number of health problems like dehydration, increased heart rate, tiredness, weakness, decreased blood pressure, heat stroke, and rarely death.
You're also at increased risk for diabetes or a bone-thinning condition called osteoporosis. CF also causes infertility in men, and it can make it harder for women to get pregnant.

The symptoms and severity of CF vary from person to person. Some people who have CF have serious lung and digestive problems. Other people have more mild disease that doesn't show up until they're adolescents or adults. The symptoms and severity of CF also vary over time. Sometimes, you will have few symptoms. Other times, your symptoms may become more severe. As the disease gets worse, you will have more severe symptoms more often.

Lung function often starts to decline in early childhood in people who have CF. Over time, permanent damage to the lungs can cause severe breathing problems. Respiratory failure is the most common cause of death in people who have CF.
As treatments for CF continue to improve, so does life expectancy for those who have the disease. Today, some people who have CF are living into their forties, fifties, or older. Early treatment for CF can improve both your quality of life and lifespan. Such early treatment includes nutritional and respiratory therapies, medicines, exercise, and other treatments.

So, although it was very upsetting finding out that your 2week old baby has a life threatening condition, now is the best time to find out so we can start treatment and prevent any infections so early on. We have to go down to the Brompton Hosp tomorrow just to have it confirmed by a sweat test. Very rarely does the sweat test show that the blood test was wrong and infact cf is not present. But we can hope....

Friday 2nd July....back to Sue for a weigh-in

1 WEEK OLD TODAY.

As agreed on Wednesday, we are back to check my weight. So there goes mummy, stripping me off once again, I guess i chould get used to this, and in the cold plastic dish. Mummy is smiling, could it be good news....."he put on half an oz" Sue says. 6lb 11.5oz Yay!!! Only a little, but a gain is a gain. Back on Monday she says to see how im getting on....

Monday 5th July......

Comfy on mummy & daddys bed 

Back to Sue, naked in the dish. This time I manage a small wee....hahaha....serves you right!! Mummy is laughing at me :) well mummy has been feeding me like mad all weekend, I feel like all I have done is eat, sleep and poop!! Ahh thats because that IS all I have done! Not good, I have lost 1oz I am now 6lb 10.5oz. I don' get it! Neither does mummy. She feels like she is doing something wrong, "maybe I'm just not producing enough milk". Sue tells her not to be silly and that I will eat as much as I want to, and I do. Little did mummy know, she was doing a perfect job and the weight loss was nothing to do with her. Sue says maybe mummy needs to stretch my little tummy a bit. Huh?!? "try topping him up with a bottle, just to get the demand higher". I thought I was quite demanding, obviously not enough.

Drying off from the bath  

So over the next week I am having my normal feed until i fall asleep, then mummy wakes me up and sticks a bottle in my mouth and I have more milk, tastes a bit different though and it takes me a few days to get used to it. M & D are laughing at the faces I pull. Strange though, every now and then I look up and see daddy feeding me, must be giving mummy a break.

Snuggled on mummy after my bath...night night...

Tuesday 13th July.....

Weigh in......WOOHOO I am now 7lb. Something is working. Mummy got a bit upset like she was failing, but after a little chat with Sue she cheered up, for now anyway...