About Me

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Well I entered the world on 25th June 2010, the day after mummys birthday. That picture up there was one of the first daddy took of me. We were all fine and was home the next day. As I am now at 9weeks, I love being in my swing, on my play gym or in the bath kicking my legs around (ready for daddy to take me footie) I'm quite the dribbler!! I do love cuddles though :) I do have my screaming fits, excersising the lungs, I get passed from mummy to daddy then back to mummy till eventually I fall asleep, bouncing me does wonders. So I'm pretty much the same as every other 9week old on the block, only difference is I have Cystic Fibrosis. I will get mummy to explain it as best she can for you and will try to keep you as up to date with everything as we can. So here is my story.....

Saturday 12 November 2011

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

Tuesday 12 July 2011

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

Friday 13 May 2011

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

Sunday 6 February 2011

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

Thursday 3 February 2011

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