Mumsie woo says I'm her real life superman...

Thursday 30th January

So today started at The Royal Brompton at midday, I've not eaten much at all only a few spoonfuls of daddy's cereal and I wasn't supposed to even have that... Tut tut! At 12:30 the nurse came and put the magic cream on my arms AND my legs, wasn't sure why but obviously know now. Then at half 1 she gave ge a sedative... Superman powers mum and dad said! The sedative didn't make me fall asleep but it did make me a little woozie and I couldn't walk without falling over. So then 2 o'clock they took me to try and get the long line in. One doctor tried twice on one arm then once on my leg by my ankle... Hence the magic cream. But after 45minutes of torture and pain they gave up. He then got a different doctor to try my other arm. He drew on me in pen where my vein was, did he get told off for getting pen on me... Ooh no he didn't, he even drew on mumsie just for fun and still didn't get told off. It did make me laugh. He managed to get the long line in my arm and all the way round and round my head, down to my foot, up my other leg, round my tummy 5 times and back up to my chest. So mum says anyway. Dad says it just goes up my arm to the top of my chest! I had a chest X-ray done to make sure it was sitting in the right place then we was all done. At that hospital anyway. Everyone said I was so brave I was like a real life superman - I just wish I could fly!! We left the Brompton about 4ish and set off for whipps cross.

When we got to whipps I started to remember everything from last year, we're even in the same room. Dad stayed for a bit then went off to football training. I finally got my first lot of IVs at 9.30pm, and all the memories of last year came flooding back. I was scared, it hurt me so much before. The nurse gave me the ceftazidime through my line which took a few minutes and I got so worked up thinking it was going to hurt like last time that I didn't realise it didn't hurt at all. Then she hooked up the tobramycin and that takes an hour. So by 11 o'clock after a quick video call to daddio I was ready for beddybies and so was mumsie. The nurse came in at 1.30 to do obs then 5.30 for my next lot of IVs. I slept fine, not soo sure about mum.

Friday 31st January 

Mumsie didn't sleep well with the late bed time IVs then really early ones so has asked if we can alter the times a bit so we might get a better sleep. So instead of 1:30pm for the ceftazidime which takes about 5min, then 9.30pm for the ceft AND the hour one and then 5.30am for the ceft again - which I didn't want to go back to sleep after - we should have it at 10am, 6pm for the long one and 2am again so hopefully should get some better sleep tonight. Doctors came round first thing and the new plan is a week of the IVs then if there has been no significant improvement made by next Thursday/Friday then I'm going to have a bronchoscopy to see exactly what's going on in my little lungies. My lunchtime IVs went through no problem, I now know they don't hurt, they're just really cold and I can feel it going in my arm. Weird! Physio came round this afternoon and I played some really good blowing games with them, it really made me cough well. Also done a cough swab too. 

This evening I had to have some blood tests. I had the magic cream on my hand and they took about 5 tubes of blood from me. It did hurt me a bit and I screamed to start with but then It was all ok and I just sat and watched them do it. Superman strikes again :)

I seen some familiar faces today, funnily enough the nurses seem to remember me from last year too, not sure if that's a good thing or a bad thing though.

Friday night is boys night. Dad is staying at the weekends to give mum a break so she will go home tonight and come back to see me tomorrow. I would say I'm jealous but I get to have a sleep over with dad so I'm happy. 

Just waiting for my last lot of IVs then off to bed and mummy can go home.

Night all

E xx

                                All magic creamed up :)

                                    Long lines in, getting it all secured

                                              Thumbs up :)

                                     All done and bandaged up.

                           All tuckered out x

Same time next year?

So centre parcs was THE best ever... Had a fantastic time. We played golf, rode our bikes, played badminton, tennis, went in the arcades, loads of swimming. It was fantastic. However, I'm still not doing very good. My cough is worse and needs to get sorted. Who knows what damage it's causing in there. So in we go for another 2 weeks, just like this time last year. But I'm not going to book my bed for next year just yet because I'll be stronger next year. Thursday 30th January I have an appointment at The Royal Brompton to hopefully get a long line in then we will be going back to whipps for the 2 weeks. 

It sucks! 

CF sucks! 

But I need to and WILL get better, then it will be me kicking cf's butt!!

Ethan x

Sunday 25th July.....Im 1 month old....

Nothing to report, just thought i would share some photos with you....

wrapped up nice and warm

day 1, a few minutes old  

cuddles with auntie kelly

just me & mummy for the night in the hosp

'ahhh' 27/6  2days old

me and mummy 3rd july 1wk 1day old

'oooo' 4th july

wow its hot 8th july 1w6d

9th july 2weeks old today

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

The start of 2014...

Happy new year!!

Last night we had auntie Sarah and uncle Kevin round to see out the year, we played some games, set off party poppers and sang that same song like last year where you link arms. Weird! We also let off some Chinese lantern again, daddy got his caught in next doors tree and we all thought it was going to catch fire... Ahh!!! But it didn't, it did take flight. After a very active late night I was still up at 8 this morning, but stayed in bed watching tom and jerry... My favourite. 

So since I last updated what's happened.... I had a brilliant 3rd birthday. Went to auntie Vicky and uncle Peters for a few days, came back and had the best party ever. All my friends came in the morning and then the family came for a BBQ in the afternoon. Then a few weeks after Jessie woo had her 1st birthday party at grandad and nana lotts house. All good fun. September I started pre school. First two days were great, i really had fun playing with all the new toys and other children. Then it was the weekend. Come Monday I just wanted to stay at home with mummy, I didn't want her to leave me. But she did! Boy did I let them know I wasn't happy about that. I screamed and kicked and banged the doors watching mummy walk away... Why? But you know what, I soon got over it and enjoyed the rest of my time there. Until the next day! By Thursday I realised just how much fun I had while I wasn't under the watchful eye of the mumsie! Those three hours seemed to fly by and before I knew it, mummy was back and it was time to go home. But I wanted to stay... And from then on I didn't look back. I have made some fantastic friends and learnt lots of new skills. Think mummy secretly enjoys the few hours peace....Well that's when she's not looking after the Jessie monster.  

                                                My first school photo  

                                

Happy Halloween from us

Christmas was the best yet. Throughout the whole of December, Santa sent one of his elves to keep an eye on me to make sure I'm behaving myself and every night he would fly back to the North Pole to let Santa know what I had been up to in the day. Then every morning before I woke up he would fly back and hide in a different place for me to try and find him. And there he would stay until I was back asleep again. Eventually Christmas Eve came and I finally gave in to sleep at 9 o'clock and when I woke up it was clear to me that Elvis -the elf, had told Santa exactly how good I had been. Walking into the front room I was hit with lots of presents under our tree. I made short work of unwrapping them all and then we sat and went through each and every present. Was great. We then went off to meet grandad, auntie Sarah and uncle Kevin at nannys home to give her her presents then back to grandad and nana lotts for Christmas dinner, dancing, singing, fun and games and even more presents for everyone. Boxing Day was spent at grandad Shiloh and grandmas with uncle Paul, auntie Vicki and jake, jack and rosa and nanny and pops. We had more presents, another Christmas dinner and played more games. What a fantastic couple of days. 

                                  Mince pie, chocolate fingers and glass of milk 

                                    for Santa and some carrots for the reindeer

                          

                                  Merry Christmas from nanny and I x

                           

  Since I came out of hospital in March generally I've been well. The odd cough and cold but nothing too bad. However, for the last month I've had this nasty cough. It's really horrible, makes me cough up gunk which I have never done before, it's not nice. Once I start coughing I find it hard to stop, it makes my throat really sore too. Good news is the two cough swabs I've had done have come back clear so hopefully it's just viral but taking a lot longer to clear. I had one antibiotic but it didn't make any difference, in fact it seemed to get worse. So the docs changed it and I'm now halfway through a course of ciprofloxacin. I still have this awful sounding cough and my throat still hurts but I'm definitely not coughing as much. As I type that, I actually have a coughing fit!! Ironic!

Anyway I have clinic in two days time, it's a joint clinic with my local consultant that I see every two months and my wonderful team from The Royal Brompton. So it's two consultants, two or three physiotherapists and the dietician, along with the usual height/weight checks etc. So fingers crossed they will come up with a plan to help me clear this awful cough once and for all, as it's really starting to bug me now!! 

The other hurdle I hope to get over on Friday is my weight. At Novembers clinic I had only gained 0.1 of a kilo and the doc wasn't happy. So mumsie and dada have been doing their best to try and fatten me up, but I really don't seem to have much of an appetite. If I'm honest, I'd rather do anything else than eat. But they have their ways of bribing me :) So in November I was 15.9kg, hoping I've gained otherwise the doc did mention something about supplement drinks I think, but mumsie would rather me eat than have them. We'll see...

Also this last few weeks my lovely Levi, the cat, has not been too well. I have taken him to the doctors a few times, held his paw when they shaved his hair to take blood cuddled him through all the injections but hopefully he is on the mend. I have to take him back in two weeks for another checkup. He's going to be 12 years old in a couple of months so has to be better for his birthday.

Well that's about all for now so over and out from me...

Ethan xx

 

                                        This is me and my cousin Jake

                             

 

                                   Me and the Jessie woo just chilling       

                     

                                  My bestest friend Nik, we found a

                                          GRUFFALO!!!

                                 

First IV admission, 15/02/2013...

It's been a while since my admission and you know what, I can't even remember what I had for lunch today let alone what happened last month. So mummy.... over to you..

E x

We arrived at the hospital at 11am and shown to our room. Or our 4x4 cell should I say. Ethan had to be nil by mouth from 12 as the doctors were going to sedate him at 2pm and try for the long line. Well, I kind of guessed it was going to be bad from the off but after a tiny bit of the sedative, trying to get Ethan to even open his mouth was difficult. When I finally got the syringe in with Ricky holding him down he just spat it straight back at me.We probably managed to get around half what he should have into him. By this time he was so distraught anyway he fell asleep after about 15 minutes.

after the sedative

The nurse came and put the ametop (magic cream) onto his arms at the elbow joint and left us for a few minutes for that to take effect. However, as soon as I picked him up to walk round to the procedures room he started to stir. By the time I laid him on the bed and the doctors started to pull him about he woke right up, he was drowsy but wide awake. And I was petrified for him. When they took the tape off his arms where the cream was it became clear that he is actually allergic to this wonder cream and his skin was bright red and raised, so this probably didn't help. They tried 4 times to get a long line in but, even with 6 of us holding Ethan down, he wasn't quite still enough. 3 of his veins popped and the one they did manage to get in went about 2/3cm before being obstructed. We decided enough was enough for now and we went back to our room to calm him down, have dinner and re asses in a couple of hours. Walking back to our room one of the nurses that was looking after us commented on how well he coped and how willing he was, after everything that he had just been through when the registrar asked to look at his hands and feet to check for veins he just handed them over without a fight. The innocence. And there was my first set of tears for him. He didnt see though. Seeing my baby go through that, crying his eyes out broke my heart to pieces. Trouble was I knew we had to do it all again as he had to get a line in one way or another. So after dinner a different reg came to see us and explained that they wouldn't be able to get a long line so was going for a cannula in the back of his hand. Trouble with these, or so I was told, was they are not long term at all. They can blow after just one set of iv's or at the most would last 3 days. I did have a little melt down over this later. The thought of putting him through this numerous times was killing me. Anyway, he couldn't have the magic cream, and the other brand Emla that I know he's had before they dont stock!! I know!! So they sprayed his hand with a freeze spray and went for it. It took her all of about 5 minutes but seemed like an hour to me. I sat him on my lap cuddling him so his arms were behind me and just held him tight. Done, cannula was in. So we went back to our room where he had his pick from a bag full of pressies, lots of cuddles with mummy and daddy and the first iv line hooked up. For our duration, he had to have Ceftazadime and Tobramycin at 6pm which took an hour and a half, then Ceftazadime at 2am and 10am which to start with took seconds as they pushed it through but the longer the cannula was in the more tender it became and was hurting him so they ended up hooking it up to the machine to do it slowly which then took half an hour. So Rick left at 8:30pm and we settled down in bed, watched a bit of you've been framed, or as Ethan calls it 'new favourite' and he was asleep by 9pm. I on the other hand didn't sleep for the first 3 days! The 2am iv came and went and he didn't even wake up.

Gorgeous smile

Physio came to see us in the morning and I learnt a few different techniques and we played some blowing games which Ethan absolutely loved and had to get everyone else to do it to. 6 o'clock came and was iv time but Ethan just screamed and cried at just unwrapping the bandage. He had only had 3 lots of antibiotics through it and it was already getting sore. This was when we had to start putting the meds on the machine so it went slower and didn't hurt my baby. He was fine with that and played happily until it finished. His oxygen sats had dropped to 94 which is not good, he never goes below 98/99 but got him to shout a bit and they started to go back up. 10o'clock obs were all fine after that.

Ethans cannula lasted an amazing 8 days. Everyone was shocked at how well he had done with it and is going down in the wards history for longest lasting cannula in a toddler. But that eighth day came and the cannula had come out. And it was just me, no Ricky to support us. I was even more petrified than the start and couldn't keep myself together. But he had to do it... so I had to do it. I have to stay strong for my baby, he's the one going through this not me, pull yourself together and be there for your son!!
The ward sister was insisting on sedation and long lines despite me telling her time and time that he wouldn't take the sedative. But she wouldn't listen and the trauma of day 1 came flooding back for both of us. My baby is crying his eyes out saying not the special medicine mummy please while the nurse is trying to get him to take it. I hate the feeling that gave me, all I could think was I was failing Ethan by not protecting him. Enough was enough and I told her to stop and actually listen to me. If they cant give him a general for a long line then we would have to have another cannula in the other hand and hope it lasts. Not the option I wanted but trying a long line again with no sedative at all and no numbing cream, was certainly off the cards.

Why cant this be happening to me? Why cant I do this for him? Why cant I make him better? One of the main roles of being a parent is protecting your child and I can't. There is nothing I can do to take this pain away from him and that rips me to pieces. Daily.

The cannula went in fine and after a few cuddles and pressies he was fine again. He was however a little concerned for his original wiggly worm (the line that comes off the cannula that the antibiotics go in) and had to keep in. In a bag. In my bag. For safe keeping obviously. Today was Friday... the weekend... Ricky was staying here till Sunday which meant I got to go home and sleep in my own bed. I went for dinner at my dads Friday night then home to bed. Funny though as all I could think about was my boys and when I could go back. They coped very well. Too well.

Nurse bear with patient bear-bear

By now Ethan was pretty much 'lord of his manor'. Every morning soon as he woke up he would go running up to the nurses station to say hello and see if breakfast was ready, although it never was on first look. All the nurses there were fantastic with him although he did have his favourites. After breakfast he would head straight to the play room for a bit before his 10am ivs. He knew his way round like the back of his hand. And everyone sure knew him. Even after a week and a half of being cooped up in here he wasn't bored, didn't play up and was still the funny, cheeky boy that walked in here brave as anything the week before. He amazed me on a daily basis even more so than usual.

The day before our 'release' Ethans wonderful 7 day cannula failed with 4 more iv's left. So we had to get a new one in and quick so as not to fall behind with ivs or we wouldn't be going home in the morning as planned and would have to wait till the evening. 5 minutes later it was done. I was pleased as I didn't have time to work myself up and Ethan was brilliant and even watched them do it, cried, but still wanted to watch. So this saw us through to Fridays 10am iv and then we was all done.. finished. He didn't understand why they was taking his wiggly worm out but I did, and I was so so happy for him. They did however manage to get a fabulous deep vein and soon as the cannula came out he bled everywhere. And I mean everywhere. A plaster wasn't controlling that and he got his beloved bandages back, clean ones obviously. Change of clothes and off we go.

We did leave behind a hamper of sweeties for all the staff there that made the whole thing that bit more bareable but the one that really needed praise was our boy. Words can not express how proud he made us. He recovered from everything so well, even though he was waking up having nightmares about the pain from his cannula he still took everything in his stride, getting stronger and stronger as the days went on. Sure, he was fed up of being pulled left right and centre, I was fed up and uspet watching it, but did he ever let that get him down. No. He is a brave, strong little boy that is kicking cf's butt!

I never want my baby to have to go through that again and will do everything in my power to try and keep him out of hospital... keep him away from coughs and colds where I can, away from smoke and harmful environments and make sure he has all his medication, physiotherapy and treatments.

There are no lengths I wont go to to keep my baby healthy, he fights his hardest and so will I.

Love you lots baby boy xxx

Playing 'stupid frogs' with auntie Sarah and auntie Kelly

best buddy Nik came to visit

Tired monkey x

Nebuliser

Last night *happy happy*

HOME... and with his best friend in the world, Levi x

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

Clear for a year...

Well I have been waiting a while to write this as iv had a bad time these last few weeks but as I have had my results back I can now announce that I have been pseudomonas free for a whole year :) I have had all clear swabs since last year. Every one is so pleased considering i have had a really bad wet cough for the last week, turns out, its just a cough.

So, since I last updated on here I have had a little blip with my weight and lost a little. The dietitians and my consultant were having talks about calorie supplement shakes if it didn't improve but at clinic in March I proved them all wrong. I put on 1.1k and grew a couple of centimetres too. Fantastic!!

Had a great second Christmas. I was dressed as an elf this year :) great nanny loved it. I also found out Christmas day that i am going to be a cousin. My auntie Kelly is having a baby, a girl to be precise. Obviously I am pleased about this and excited but no way near as much as mummy is.

Well as the so called summer is approaching and we are hopefully out of all the bad weather, fingers crossed i continue in good health as well as all my other cf friends :)

Believe it or not but I will be turning 2 next month so will be back to tell you how it all goes...

E x

This is my Nana Lott, Great Nanny and Auntie Kelly at Christmas

Me and Grandad (ga-ga as I like to call him) at Christmas

me, dresses as an elf :)

My Halloween Dracula outfit 

Looking dapper for aunty Kelly's 30'th Birthday partaay :)

A catch up on the last 3months...

Hellooo... just a little catch up on the last 3 months, not that there has been much going on really. Mummy and daddy were really please to hear that all my annual assessment test etc came back clear and all good. Not being on my nebuliser could mean anything though, as everytime i stop it that rotten pseudo comes kicking back!! The next clinic appointment after my annuals was September 16th so only time would tell.

In the mean time mummy, auntie Kelly and mummies friends (Vicky, Amy and Charlotte) successfully completed the Adidas woman's challenge for the second time on 11th September, Grandads birthday :) Daddy actually gave football a miss this year to show his support, along with grandad, Nana Lott and mummies friend sheila (who i believe is also known as Catherine) mummy and the girls done very well and raised lots of money for the cftrust. A few weeks before the run, mummy was out training with Vicky Tabs, when she pulled her Achilles. Poor mummy tried to carry on but could barely walk let alone run, so had to hobble the 5k. But either way they all done it. Well done x

So clinic came round, all went well. I have got a little taller and put on a little weight. Physio seemed really pleased with my chest, although you can never tell until we get the cough swab results back. We went into see the Dr who went over the results of the annuals. Although we had letter in the post explaining the results, it was all a bit gobble de gook and we didn't really know what all the big words meant so Dr O'Callaghan went over them. Everything was really good, my lungs were clear, the washings they took were clear. All my bloods were fine, my vitamin levels were fine. The only thing it did show up was that at some point in the last 6months i had had the onset on pneumonia but it never got a chance to take hold which was good. Basically, they said it was probably a cough i had, in which case we upped my anti's, a little extra physio here and there and all of that along with my fantastic anti bodies i fought it off before we really knew i had it. GO ME!! So to sum it up, iv had a rather healthy first year of life :) and that's just how i intend on continuing.
The next week my cough swab results came back... clear :) so i had the bronch done in July when i was having my month off my neb, had the neb for August, then off it for September when i had the swab done and it came back with a big fat nothing. Couldn't have been more pleased, fingers crossed the pseudo has finally given up trying to get me! I'm just too strong :)

Halloween....we went for a spooky walk at the Gun powder park with my playgroup. I was dressed as Dracula. It was very dark and there was lots of spooky pumpkins and ghosts around, and lots of spiders for us to find. We went to the bat boxes but i think all us kiddies were just too noisy and scared all the bats away as we didn't see any. When we got home, we had a few trick or treaters which i handed out some sweeties to but not many. I think mummy bought a few too many on purpose hehe!!

Fireworks night was FAB! I absolutely love the big weee whizz bangers, so pretty too. Thanks to grandad and Nana Lott for having a party, it was the best. We had to leave early though to get to another party, one of daddies friends engagement party. It was really late and past my bedtime, but no way was i going to sleep when i was getting my groove on!! (and i had found the malteasers in the buffet room, result) I eventually conked out when we got home, and was up bright and breezy the next morning at 7am :) mummy and daddy was well pleased with that i could tell haha.

Since Septembers clinic i have been feeling great. Am due in again on 18th November, so keep your fingers crossed for good results then. Will post after clinic x

Ethan x

A note from mummy...

I can't believe we have come to a year down the line...this time last year we had a nearly 3week old perfect baby boy. Little did we know that in 2days time our world would come crashing down. On the 14th July 2010 at 11oclock I got a phone call from the health visitor to say she will be coming round at 1pm with a colleague. She kept going on about Ricky being there with me which he couldn't. This was only his second day back at work. I was supposed to be having Catherine round for lunch. The health visitor rang a second time just to make sure there was no way Ricky could be there. No I said. Still I didn't think anything was wrong, you don't do you. No parent expects to hear that their is something wrong with their perfect little baby. After speaking to Ricky he said he was coming home. I told him not to worry, it's probably just routine! Maybe I was just too tired and sleep deprived for the alarm bells to really kick in!

So 1o'clock comes, Ricky's home and there is a knock at the door. Theres Elizabeth (hv) and a lady called Pat. After a brief chit chat they get down to the real reason they came....I can still hear her saying it to us now...remember the exact words she said...something has shown up in Ethans heel prick results...have you ever heard of cystic fibrosis...

I think my heart skipped a beat there and it felt like time stood still while i took that in, was she saying there was something wrong with my boy. Of course we had heard of it but didn't have a clue what it was. Pat went on to explain basically in layman terms for us to try and understand what that meant. The one thing that stood out above everything she was saying was life threatening....life threatening! So my perfect 3week old gorgeous baby boy was going to die.... my boy, our boy! This cant be right, they must have got it wrong, got the wrong results, mixed up the blood test. Something, anything...it cant be true! I sat there with Ricky crying, just holding my boy, squeezing him. how can this be happening, I'm his mum, mums are there to protect their children, to help them, to make everything better yet there is nothing i can do about this. Helpless, sick, failure...those words barely even come close to how i felt right then!
Pat and Elizabeth were great, very supportive and explained things as much as they could. The next step from here was to go to the Royal Brompton hospital tomorrow for a sweat test to have it confirmed, then they left.

There we was, sat there faced with these horrible thoughts running through our minds! In the last hour our whole world had flip turned and crashed with a ten mile pile up. We had to make the call to our family and tell them what had just happened. How can you tell your parents that their first born baby grandson has a life threatening condition that will eventually kill him. One of the hardest phone calls i have had to make. We tried. through the tears, to explain it as best we could. Of course we missed out bits and forgot loads. The family rallied round to support us. That night went by in a blur, not only was we adjusting to life with a newborn baby, we had all this to contend with too. All night i had all sorts running through my head. How is this going to affect his life? will he look any different? how long have we got him for? all this was answered the next day.

After having the confirmation and talking to the team at the brompton things seemed a little clearer. He will not look any different, which i was pleased about as children could be so cruel and i didn't want him to be bullied through school for being different. The way they put it then was that he is just more prone to coughs and colds and if we don't treat it in time he could get quite poorly, they explained the physio and medication that he would need and sent us on our way. We had to go back the following week for full 'training' as it was and to be educated fully. We left there feeling slightly better about it all.

Still doesn't take away the thought that we could possibly out live our precious little boy. Although life expectancy has gone up to 37 now, that is still way too young. and only a percentage get that far, how do i know he will be one of those. All we can do now is keep Ethan in the best health we possibly can, keep him away from anything that could possibly harm him like people with colds and smokers, and keep up with all the preventative methods such as physio and medication to try and keep it all at bay. Keeping ethan healthy is my objective now, if i cant do that what can i do?

I pray every day that a cure will be found this month, this year, just as soon as possible before this horrible condition takes over my boy. Everyday we are reminded that he has this, we don't get a break, we just get on with it. But to have my boy each and every day makes it worth it. There is nothing i wouldn't do for him and if i could take it from him and give it to me i would do it in an instant. It breaks my heart knowing the facts and I'm always asking that question 'why him'  but am so grateful to have him, he is my absolute world and i cherish every moment with him. To reach his first birthday and in general be pretty well was fantastic, this time last year we didn't have a clue what the future held, we still don't but the first year was overall a healthy one.

Life is a time bomb no matter who you are,

But when it comes to my boy..... every day is a gift xx

Annual Asessments...

The coming of age.....being the grand old age of 1 I had a few different tests etc. I went to Great Ormonde Street Hospital for a lung function test. This was a repeat of the one I had back in September. I was given a Sleeping Syrup that induces a deeper sleep and they got on their way. Was exactly the same as the last one so at least mummy and daddy knew what to expect so was a bit easier on them. I had one long sleep that day :) but was back to normal the next day.

Next on my list was a bronchoscopy and a CT scan. The bronch I had last year but the ct scan was all new. It still didn't make it any easier on mummy and daddy when they took me down and I was GASSED!!! haha, sounds evil aye!! Just messing, although I was put to sleep with gas. It was a good hour and a half before we were reunited. I had a bandage on my foot where the cannula was and 2 little ones on either arm where they took blood. Rather that than they try and take the blood when I'm awake. So after I come round fully we went back up to our room where I had some lunch, I was just a tad hungry seeing as I hadn't eaten since mummy woke me up at 6am...Anywho, professor Bush who carried out the procedure came round about 5:30pm and gave me the all clear to go home, said everything looked great but obviously cant tell fully until they get the full results from the lab in a few days but he sounded pretty pleased! GO ME :)

2 days later mummy spoke to Katie my cfns (cystic fibrosis nurse specialist) and she said it looks as though the washings they took from my lungs were growing 'something'. I bet its that dam Pseudomonas! The next 2 days mummy was a nervous wreck, seeing as daddy was away training for work and my consultant had mentioned me needing to go in for IV's dependant on Mondays bronch. I have already had 3 courses of anti biotics for pseudo and they were reluctant to do a 4th. Pants!

Friday Katie called with the results....Clear!!! I know... I know how can it be clear, she said it was growing something. Well turns out it wasn't and there is nothing going on in there.... NO PSEUDOMONAS!!!! Now baring in mind I had the bronch 4days into my neb free month its anyones guess as to if i really have kicked it or if its going to come back this month. Doctor O'Callaghan from whipps said I don't need to go back until September now but I don't think mummy is very happy about leaving it that long so can see something happening at the end of this month, even if its just a cough swab....

Well that's us up to date for now anyway,

E x

25th June 2011.... My 1st birthday :)

Today I turn 1 year old....a whole year....wow. Mummy and daddy have a little party planned for me. Just close family...both Nana's and grandad-dads, aunties and uncles and a few extended family and friends. I had an excellent day, got lots of lovely presents and some money towards my swimming lessons. Daddy done a bbq and mummy made me a lovely mickey mouse cake, with a little decorating help from daddy. It was a very long day and as did the last party here, it ended with Nana Lott attempting to play football...was rather funny :) once everyone had gone I had my bath and hit the sack leaving mummy and daddy to tidy and clean up :)

Love 1year old E x

Results from clinic 20/05/11

So I had my clinic appointment on 20th May. After 3weeks of no nebuliser this is quite an important cough swab. Docs are a little concerned at my weight as I have lost a little, dunno how because I eat like a horse :) other than that I'm all good. And my Tongue is NORMAL :) definitely the colomycin....

Took a while to get the results of this cough swab as the doctor had gone on holiday! But after 2weeks of chasing them up we got it....positive...pseudomonas!! Looks like I can't fight it off completely. Not without the help from my neb anyway. So they decided 2week course of antibiotics and back on the Tobi for June. Next clinic is 1st July but my CF nurse wants me to have another cough swab done when I finish the Cipro. So on the 17th June I went back to Whipps cross for another one. Dr told mummy she would call on Tuesday with the results.

Monday 20th June we went to mummy's cousin Paul and Niki's wedding. Had a lovely day even if I did make a bottom burp right at the wrong time during the ceremony :) really enjoyed the day and love being around all the family. Niki looked lovely and paul didnt scrub up too bad either.

Tuesday...daddy has the week off so today we went to swimming as usual, then we went off to great aunty vicky and uncle peters in kent for a few days. Its lovely there, in the middle of nowhere... went to the aquirium and had fish and chips on the sea front. the couple of days went quick and we had to come back friday, reluctantly, as mummy and daddy had to get everything ready for my birthday.

needless to say the doctor from whipps did not call mummy on tuesday with the results and it took quite a few phonecalls to them befre we got them.... end of it is....CLEAR :) so after being back on the tobi nebuliser its kicked the pseudo again...fingers crossed it stays away...

E x

Sorry its been a while...

So my first holiday :) centre parks was great. I loved having daddy around all the time, wish he didn't have to go back to work! I also loved the lack  of routine :) the meds and nebs were still there but the rest of the time was all about fun. We also went swimming more or less every day, my favourite! Mummy and daddy (i think) enjoyed it and had a nice relaxing(!) week away. Soon we was back to reality...

Daddy went back to work :( and i was still faced with this horrible pseudomonas on my tongue. Iv well and truly baffed all the doctors as they have never seen anything like this before. There was talk, before we went away, of changing my nebuliser to a different medication but that didn't happen until April. Daddy is convinced its the colomycin that's causing it. Who knows, the docs surly don't. So April i started Tobi in my neb. Things are looking better. My tongue actually looks slightly normal. When i have Tobi i can only have it for one month, then a month off then a month back and so on. So for May, the month off, the docs said to go back to colomycin, to make sure we are keeping it off my lungs....low and behold the black tongue makes its return! Daddy was right, it has to be something to do with the colomycin. They made the decision that the rest of may i would be nebuliser free :) yay! And then back on tobi for June. Thats where we are at the moment...

Swimming is still great, mummy and Lana are learning lots :) we are now in to the toddler class. I'm the baby of the group but i dont mind. I'm nearly walking now :) i have no problem if i hold on to mummy or daddy, but still a bit wobbly. We moved house recently, i love it. have a nice big living room to crawl around in and a big kitchen, i love running up and down in my walker, chasing the cat :) and we have a lovely garden too. At first i didn't like the feel of grass on my tootsies but I'm cool with it now :) bring on the summer!

I have a clinic appointment next Friday (20th May) so fingers crossed for me, who knows maybe they will chop my tongue off...

Love Little E xx

January...On the mend...?

So January's cough swab came back with a big fat nothing again. Hopefully that rotten pseudo has gone. After changing my reflux meds my sickness has eased right up, iv had a couple of slip ups but all in all I feel great :) however, m&d have just noticed that I have a black tongue. Sounds strange I know but to see it, it's like a black coating towards the back of my Tongue. We have our first shared care appointment on 21st jan at our local hospital so will get the doc to have a look at it then.

Swimming is going great. I'm loving it, frankie and I are getting really good at the underwater stuff. Mummy and lana are getting better too but not as good as us. The end of January marks the end of our intermediate 1 class :) to end the term we swam underwater through a hoop. See told you we was getting good :) next week (beginning of feb) is the start of intermediate 2... But we will miss the first lesson as we are going on HOLIDAY!!! :) we are off for a week to centre parks with nanny and grandad white, uncle Paul and his friend mike. Fun fun fun...

So the doc looked at my Tongue and he thinks it's a fungal infection. Apparently the nebuliser can make it more habbitable for fungi. They took a swab and sent it off to the lab for testing. After a looong week the results come back positive for pseudomonas :( that horrid bacteria that we thought we got rid of. I have one more cough swab in febuary to say if it had gone or not. Obviously not. They decide to change my meds again and also once we get back from holiday they are going to change my nebuliser to a different med too. Hopefully the combination will get rid of it once and for all. I shall keep you posted on that.

Mummy Is now freaking out packing everything except the kitchen sink haha. Will update soon after my first ever holiday :)

Cheerio... E x

New year....on to better things....

Sorry its been a while. So after the bad news of the pseudomonas in my lungs November, we went for our last clinic appointment of the year and my cough swab came back clear :) 2 more to go before we get the all clear. On the way to the hospital I was sick in the car, this was the start of a nasty tummy bug that lasted all over Christmas so all in all not a very good first Christmas for us. I started to get over it then new year it was back. Soon as our cf team were back after the new year mummy called them. They decided to change my reflux medicine to see it that helped as they didn't think it was a bug. Touch wood it seems to be working, more meds but it makes me feel better so its worth it.

So my first christmas... I started at home with mummy and daddy and watched them open presents. I did try and open a couple but was feeling too poorly. Then we went off to see my great nanny. I had lovely cuddles with her before going off to my other great nanny and grandads for Christmas dinner. We spent the day there with great nanny and grandad, great uncle Danny, nanny and grandad White and uncle Paul. Was a lovely dad although daddy had to pop home to get me even more clothes a I was quite sick through the day and used all the spare ones mummy took for me.

Boxing day we went to grandad and nanna lotts with auntie Sarah uncle Kevin, auntie Kelly and uncle John. We played games had another christmassy type dinner. After talking to a doctor last night mummy started giving me normal food again And my sickness seemed to ease up. All today I have been fine :) that's something good. I had afew ups and downs between now and new year but hopefully im on the mend.

New years eve was great. We had a party round nanna lotts. Lots of friends and family. I had lots of cuddles with everyone. At the strike of midnight (I was tucked up in bed) they all went outside and lit Chinese lanterns and set them off. I woke up briefly while they were doing this and m&d came and said happy new year to me. We all made a wish and then I went back to sleepy....

Heres hoping all ours and your wishes come true...

Wishing you all a happy healthy new year :)

Ethan x

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