Paris and Christmas 2014..

Disney Land Paris 2014.

Hi Guys!
On the 17th December i want to Disney Land Paris with one of my best friends and her Family. We stayed in a lovely Disney Hotel in the Disney Village, and we had a great time going on all of the rides and meeting the characters!


Then on the 19th we got on a train and i had no idea where we were going, and it turns out that Jayne, Trevor and Paige were surprising me and taking me to the center of Paris to see the Eiffel Tower, Notre Dame, the Louvre and other things around Paris!  

It was an amazing day, and i was so glad to be able to tick it off my bucket list at last. 

Christmas 2014!

I hope you all had an amazing Christmas this year, and i hope that 2015 will be a good year, hopefully it will bring lots of fun, and of course good health!

I am so happy and grateful with all the amazing gifts i was given off my family and my friends, Some of the things i got are One Direction tickets for the 30th September, An Ipad Air,  Go Pro camera, and a lot more! I couldn't have asked for a better day, i spent it with my Mum and Dad, and half a day with my big sister Danielle.

This year was the first year in 3 years where i didn't have to have my IV antibiotics over Christmas and New year, so it was a good change being able to do what i want and not have to arrange things over my IV's schedule. So health wise i'm feeling pretty good at the moment. I have a bit af a chesty cough but the weather and things doesn't help, but i have CF Clinic on the 7th January.  

Thankyou for Reading, and if i don't update before Happy New Year!
Bye..xo

IVs are finally over..

Hi guys!
I started my IV antibiotics on the 12th November for 2 weeks and i just finished them on Wednesday (26th)!
Sorry i haven't updated whilst i was on them, but i just didn't feel up to it really. I was just so tired and all i wanted to do is sleep. But i will update you all now :)
-
So i went into the hospital, and got my needle in. I usually have the smallest needle that they do but unfortunately they had stopped making them so the one i had in was the same length needle but the plastic part which holds the needle was way too big, i couldn't even put my arm down properly without catching it. And it took 4 attempts to get my needle in, in the first place so my Portacath itself was hurting for the first few days of my IVs.

But it's all over now, I'm feeling so much better and i can finally get back into Cheerleading, having fun, and most of all start getting excited for DISNEY LAND!
I'm going to Disney Land Paris on the 17th December with one of my best friends and her family.
We are really excited to go, and we have been waiting nearly all year, and it has finally come around so quick!

Thankyou for reading, i will update again in a few days..
.. Bye xo

Time for IVs again!

Hi guys!
So as you all know I've not been feeling 100% since i came off holiday to be honest.

But some how I've managed to stay away from the IVs this long, just being on a few oral antibiotics every now and then.

But now it's been 12 weeks and i can tell that i really do need my IVs, so I'm starting them on Wednesday..

I'll update more on my IVs, how the hospital goes and if i get the results for my PH study on Wednesday or Thursday!

~Halloween!~

I hope everyone had a good Halloween?
I went to the Pleasure beach with my best friend, and a friend from Essex, that i met in turkey!
We had a really good night, Then on the Saturday me and my family, and our friends from Essex went to our friends Halloween party, I was Alice (Alice in wonderland) , My mum was a Vampire and my dad was Beetle juice! It was such a laugh as i had never seen them dress up before!

Thankyou for reading guys, speak to you soon, xo

Finished my PH study!

Hello!
so yesterday (28/10/2014) i started my PH study test. For those of you that don't know what it is, It's basically a tube that goes through my nose, down my throat and into my gullet, just above my stomach. It's to measure my acid levels for reflux, as i have it quite bad the doctors said at my last clinic that they want to change some of my medication around to try and keep it under control.

I wasn't looking forward to this test at all, as I'm not good with things  in the back of my throat, I've had NG (feeding tubes) in the past and they didn't end well! But i knew that i had to have it done..

As soon as i went in the room and the nurse was getting the tube ready i just started getting distressed, nervous and all panicky. She explained it all to me and then i just lost it, the tears were flowing and i just wasn't co-operating! 

After a while i decided to just get it done, as i thought the sooner i get it in the sooner it comes out, so the nurse attempted to put the tube in, it got so far and then it came straight back up... in puke.

So then i was really agitated and i started to have a coughing fit, after another 10 minutes or so we had another attempt, and it FINALLY went in. I was in a bit of pain in my throat and it was quite uncomfortable but i had to put up with it. I barely ate anything whilst the study was on, and i couldn't even take my tablets as they got stuck in my throat!

I'm just thankful it's over, and hopefully i won't need another one. EVER!

Thanks for reading guys!
Speak to you all soon, bye xo

PH study

Hi guys!

so this week I have had to stop my Omeprazole as i have a PH study on Tuesday.

My Omeprazole is for my Reflux. I suffer quite bad with it, and i have hated not taking the tablets this week as it's just getting worse and worse. However i know that this PH study will give us results to tell us what we need to do for the future!

I've never had a PH study so I'm a little nervous for it, as its a tube in my nose and down my throat, it just puts me in mind of when i was younger and the nurses tried to put me a NG tube in (feeding tube, as i wasn't putting on weight) they tried 3 or 4 times and i just puked them ALL out! (eww, gross i know!) So I'm hoping I don't do that with this test.

So please keep your fingers crossed for me, and thoughts and prayers would be good.

Speak to you all soon, xo

16th Birthday!

Hey Guys!
Yesterday was my 16th Birthday, i had an amazing day in Manchester with my family.
We went shopping in the Arndale center, and then we had a meal in TGI Fridays.

I got some really amazing cards and gifts including an Iphone 5s, a Pandora ring (shown in the photo) , a phone case, some Hollister spray,                                                   some money, i got my hair done and i still have some more to come of family and friends!

So overall it was a really good (and tiring) day!

Thankyou to everyone who wished me a happy birthday!
xo

wow

Hi Guys!
So recently i have shared my bucket list onto my blog, and i didn't expect anything from it, i just thought 'i may as well share it so people know what i want to achieve in my life :) '

So within a day of my bucket list being published a young girl called Zoe contacted me and said that she wants to help me achieve some of my wishes!
She set up a Facebook page called 'Emily Bonney's Army' and also created a Gofundme page so people can donate to it, and then it will go into a fund and help me complete my bucket list!

I was so overwhelmed with all the support of people, not just on facebook, but also my Friends, Family and all of my Social media family!

If you want to donate to the gofundme page i will leave the link below!

http://www.gofundme.com/fqi8ow

Thank you so much guys xo

Holiday, antibiotics, and scotlanddd

So I haven't posted in forever, but I've been so busy, ill, and then my ipad broke.. Again!

But since I last posted I went on holiday to turkey for 16 nights with my mum and dad, it was soo good, we didn't want to come home!

Around the second week of the holiday I started with a bad cough, but we always take extra antibiotics with us when we go abroad just incase, so I started on a 2 week course of augamentin. By the time we got home we thought the cough would have gone, or at least died down, but it went the opposite way, I ended up feeling really down and I had no energy to do ANYTHING.

So not even a week back in the country and I ended up at the Childrens assessment unit at the hospital, they were questioning Whether to start my Ivs, but as I'd only finished them about 4 weeks ago we said no and off we went with yet again more antibiotics. Long story short, my chest just kept getting worse,  and I still had 0% energy, so we went back up to the hospital and we started on some stronger antibiotics and we upped my azithromycin, I'm starting to feel a lot better, still not 100% but I'm getting there!

We also had a week up in Scotland to see our family, and we met up with my mums cousins who live in Canada! We had a great time, visiting Edinburgh and of course SHOPPING!

Annual review..

Today (Wednesday 4th June) I had my annual review, this is a 3 hour appointment where I see my CF consultant, my physiotherapist, dietician, out reach nurse and then I also see the CF doctor from royal Manchester childrens hospital, the dietician, nurse, and physiotherapist also from RMCH.

It went really well to be honest, I have been added on some more Vitamin tablets, as my vitamin D levels are really low, they're supposed to over 50 and mine are only 13, but it's nothing too major and not to worry about it. The appointment was long but they did go through everything with us, they went through all my medication and upped some of the tablets to the higher dosage to keep on top of things.

I had my lung function which was 95% so we are really happy with that, and my height and weight have gone up which is amazing as I haven't been in any weight supplements for 18 months now and I am now in the right centile for my age/height/weight!

There is a few tests coming up for me now, I will be having a ultrasound scan and chest X-Ray which I have yearly anyway but I will also be having a hearing test and a PH study for my acid reflux. I am currently on omeprazole for my reflux but I've been getting it quite bad at the moment so we're seeing if I need to be in any other medication for it. I'm not really looking forward to the PH study as It will include a tube going in my nose, down my throat and into my aosophegus.. I hate things like this, so it should be fun!! NOT! But if it has to be done, it has to be done..

Anyway on the 8th may I had my sinus surgery and they depended up doing a complete different operation in my nose as they decided the holes they were going to make bigger were actually okay! It was actually polyps which were making my sinuses blocked and causing my headaches, they count get all of the polyps out which means I may have to have another sinus operation to get the rest out, but it will be more invasive and more painful!

That's all for now, but it will update on things soon!💕

Ivs, sinus operation!

Today I have started my Ivs, they are 3 weeks early but I am having on operation on Thursday for my sinuses.

The operation is to cut little holes on the inside of my nose so my sinuses can drain, and then it will hopefully get rid of my headaches!

update..

I have been keeping pretty well at the moment, I've just had a persistent cough which i have been put on another dose of oral antibiotics, which to be honest is making it better already - and I've only been on them a few days!
We have also just recently found out that i am very anemic so i have been put on a lot of iron tablets, i had blood tests done back in February just before i got admitted into hospital to start my IVS, and the results just got back a few weeks ago and my blood counts were very low - which explains why i kept going dizzy, feeling weak, feeling sick and looking very pale. I've been taking the iron for about 2 weeks now and i feel a lot better but not 100% yet, but I'm sure in the next week or two I'll be 110%!

I have my next E.N.T appointment on Thursday (10th April) and I'm hoping that the doctor will actually do something about my sinuses and headaches this time and not just keep prescribing me more nose spray which I've had twice already and it hasn't worked on both occasions. A few years back i had a sinus wash out, it is an operation which basically cleans my sinuses! When i had it last it made a whole lot of difference and the consultant did say i may need it again when I'm around 15/16 years old.

I will do another update about how the appointment goes and what is going to happen.

ill, = early Ivs :(

I haven't been feeling to good for quite a while now, basically since the new year!
My chest hasn't felt 'good' for AGES and i just haven't felt like myself in a while. I had been on 3 different courses of antibiotics all of which for 2 weeks, but it still didn't work and if anything i felt worse not better!

So after a few weeks and my mum and dad knew i wasn't feeling any better they decided to take me up to the hospital again, but this time even the doctors and nurses knew that there was something wrong with me, so they called up my CF consultant (Dr Ned). He was quite glad i had gone up to the hospital as he had just got my cough swab results back which showed i was growing some more Pseudomonas in my lungs. So he admitted me on to the adolescent ward, and started my IVs right away.

When i usually go on my IVs i only have one antibiotic called Ceftazidime but this time aswell as Ceftaz they started me on another antibiotic called Tobramycin to try and dampen the pseudo down and get my lung function up to the 90's again!

I am now out of the hospital but my IVs will carry on until nextThursday.

Update. And cheerleading competition!

Just a little Update!

I have been to the hospital today, firstly for a port flush and also to be looked at by a doctor as I have been feeling abit under the weather for a week or so, I have been on a few courses of antibiotics but non of them have made me feel much better so we thought it was a good idea for the doctor to listen to my chest again!

Im back at home now, but the doctor has given me another course of antibiotics because my cough still isn't going away so hopefully I wont need anymore after I finish these! I have also been getting a lot of headaches recently because my sinuses are playing up :( but my doctor has given me some drops to put in my nose until I get an appointment through to go the E.N.T department at the hospital!

Anyway some good news, last weekend (January 25th) I had a Cheerleading competition!

I was in 5 routines, and it was an amazing day, We came 1st in 4 of the routines and 2nd in the other! We also came Overall grand champions in our Junior Jazz division and we got a fully paid bid to go to a competition in Edinburgh Scotland in a couple of weeks, so that will be really good practise for us before nationals in March!

CF clinic, and not feeling to great!

I've not been feeling too great this past week, ive had a bad cough and getting really tired, i went to the doctors on monday afternoon and i got put on a weeks course of oral antibiotics, however i am getting another weeks course just to make sure everything clears up so i can be 100% again!
~
I had CF clinic wednesday 15th and surprisingly it went really well, my lung function was 90% i had grown and put weight on so it was really good and my doctor was happy, i just need to make sure my cough goes away then i will have more energy again!
~
I have a cheerleading competition next weekend (25th&26th) so i definitely need to make sure i'm well enough as i will be competing in 5 routines!!
  Im so excited as its the 1st competition of the Cheer season! 

First post of 2014!

HAPPY NEW YEAR!

I hope you all had an amazing Christmas and new year, and I hope that 2014 can bring good health, and we all hoe that we can eventually see that CF will stand for Cure Found! x