Wednesday, October 31, 2012

Beaver sleepover

The beaver sleepover went well. I came in well under budget which was even better. The beavers arrived at 10am and the first thing they did was go for a walk (yes in the nice frosty, snow sat on the cars, very large chill in the air) to collect things like leaves to make a collage picture later on in the afternoon.

There lunch afterwards was a very warming jacket potato with beans and cheese, which was shovelled down by the kids! Followed by a cupcake each that the young leader had made for them.

The afternoon was filled up with making play-doh, finger paints, cake pops and collage pictures with the leaves they had collected earlier. We also had a visit from a local running/athletics group who taught the kids some cool things to help make them run faster and to be able to succeed in the long jump and high jump when they are older. 1 of the ladies also brought in her olympic torch for everybody to have a hold and a picture taken!

After that very busy afternoon, we had decided we would treat the beavers to takeaway pizza. We ordered 6 cheese and tomato pizzas for 13 beavers (the youngest being 6, the oldest being 8). I thought there would be loads of pizza left over- there was 3 slices. So between 13 of them they devoured 45 slices of pizza! It was an impressive sight! The adults also all had their own pizza (with whatever topping they wanted, I just stuck to cheese and tomato for the kids for simplicity). We ate it out the box all sat round in a circle on the floor. The kids were abit confused to start with but then got into it.

After pizza we went outside and did sparklers, before coming in, getting into our pjs, setting our beds up (roll mats and sleeping bags!) and watching a film using the projector I had borrowed. I took 'The rescuers' for them to watch, and not 1 of them had seen it before! Sad days for classic disney. They all enjoyed it and were all fast asleep by 9.30pm. Even those who had been worried/upset when they first arrived about staying had no problems what so ever.

Sunday morning, due to the clock change, we were all up, dressed and beds packed away by 7.30am. Ready for our breakfast of cereal, followed by pancakes and ice cream for the beavers and bacon butties for the adults! We then did a spaghetti and marshmallows challenge (which our beaver mascot also helped with):

Mr Beaver also decided to sit in amongst everything that the beavers had to take home with them (it was an impressive amount for a 24hour sleepover):

The badges the beavers got for coming on the sleepover:

At the end of the sleepover, we invested 2 of our newest beavers into the colony and handed out lots of badges (the beavers who were the newest and had been invested went home with 9 badges!), all of the things they had made and some certificates congratulating them on surviving a beaver sleepover.

The last picture is of me on the sunday morning about 9am, with another hour left to go on the sleepover. I was operating on about 5hours sleep! Whilst the kids slept all night we had some whimperers in the sleep and instinct kicks in for you to go check on them and make sure they are alright. I never sleep well on a beaver sleepover!

So that was a beaver sleepover in a nutshell!

Thursday, October 25, 2012

Catch up time

So the IVs have finished. At the start of them my lung function had dropped to a new all time low of 52%, by midway they had come up to a fairly respectable 62% and a week after they finished when it was retested it was back to 58%. 58% seems to be my new norm. I dont really like it to be honest but its something to deal with and live with. This time last year my norm was about 65%. It doesnt sound like a big difference but if it drops the same amount every year, it will be just 3-4years before it is in the 30s and words like 'you should consider lung transplant' are bandied around. I would rather those words werent heard until like another 10years or so, so now it becomes a battle to get my CF team to support me and work out a way to keep them stable at where they are now for a few more years.

Wedding plans are going fairly well. I now have the church booked, a reception venue booked, the mens suits booked, bridesmaids have been asked and accepted their roles, the ushers have been asked and accepted their roles, D has a best man, I have a colour theme. The cake design is sorted, save the date cards have been ordered and sent out, lots of ideas for the little extra bits have been thought of and are being worked on.

I am finding wedding planning and it all involves quite stressful, but not the parts you would think. Things people say should be extremely stressful, I have completed with relative ease, the bits that should be fun and joyful I am finding the most stressful. I am already sick to the back teeth of the phrase 'its your day, you should have what you want BUT' as this is then usually followed with something I don't really want or like but will end up having no choice of having or doing to please other people.

a beaver sleepover is planned and organised and being run at the weekend. Hopefully the kids will enjoy it, about half the colony are going which is a good number. Got some parent helpers as well which is even better.

Tuesday, October 9, 2012

Cystic Fibrosis Challenge

Let me know if you have a go!

Monday, October 8, 2012

Friday, October 5, 2012

photos (updated)

I realised it may be helpful for some people to maybe have a little bit of a better understanding as to what IVs are and what the process kind of involves, so here are some photos to show, which may make things easier to understand.

So firstly, my veins are rubbish. After 10years of constant access and needing antibiotics through my veins (IVs= intra venous antibiotics) they finally gave in and I had to have a port-a-cath (port) implanted, which has a line that runs directly into my heart. This port is then needled and I have instant access when needed, things are alot simpler and easier than the attempts to insert long lines or cannulas which could give up the ghost at any point during a 2 week course. So just to clarify- I always have the port (which is under my skin and when its not needled if you want to have a feel just ask!) in my body, but there isnt always a needle there. Below is a diagram of what a port looks like and in the picture it is actually the same place as where I have mine! Also a picture of the needle that is used to access it.

So this is what it looks like when my port is needled, you can just see the clamp on my line at the bottom of the picture and under the white gauze is the needle (See pictures above). You need a clamp on the line so that blood cant come back into it, potentially blocking it and causing lots of problems.

This is a picture of the anti-sickness tablet I have been put on to help with some of the side effects but it also leaves me feeling incredibly sleepy!

The drugs fridge with 5 days worth of medication in it and some of the ancilliary stuff on the top for flushing between antibiotics.
My IV tray, pretty much set up for the next dose of IVs (just missing 1 of the antibiotics).
So a dose of IVs goes flush, drug, flush, drug, flush, heparin. The flush is just simple saline to clean the line. Alot of the antibiotics cant mix in the line because if they do they can crystallise and then block it, so its always very important to put saline through before and after each drug. Then right at the end you put heparin through to prevent any blood clots forming in the line between use. Below is the tray with all the stuff ready to go! Looks scarier than it really is.

 Giving the first flush:
 Connected to the first antibiotic:
 The device being used is called an intermate. Its like the pumps they use in hospital but disposable and doesnt make an irritating beepy noises!!

Thursday, October 4, 2012

1 big bundle of emotional

So I most say I completely forgot the emotional impact IVs have on me as well as the physical side effects of the drugs.

I again spent a good portion of my afternoon in tears, this time after having a falling out with my mother and we spent an hour and a half in total silence in the house- that wasnt uncomfortable at all! I think our argument is resolved now, things may just be on thin ground for awhile as we walk this very interesting tight rope.

I feel like everything is all on a very fine line with everything, with lots of pressure from lots of people for lots of different reasons and I cant keep it all balanced and keep everyone happy. I am very close to my breaking point and going to end up snapping big time, so if you see me in the next few weeks I apologise now for any extreme emotional outburst you may witness!

IVs are onto day 3. I spent most of yesterday sleeping interspersed with a visit from my friend in the afternoon and my fiance in the evening. Today I did abit more sleeping and made it the beavers meeting. As I type my evening dose of IVs are entering my system and I'm gradually feeling worse and will be shortly going to bed.

The side effects are not great with these 2 drugs and as they enter my system I seem to get a surge of them, which then gradually die down over the 8hr gap before rising again. I know this isnt just a psychological things as I will wake up in a morning and just know that I am connected to my ivs, even though I havent heard my mum enter or leave my room to start them. Its not great and very hard to comprehend how it is to feel like I do, unless you have experienced it yourself.

I have already got back into the habit of tucking my line into my bra, so it doesnt dangle down, so less likely to get pulled or caught. Its an interesting sight!!

Tuesday, October 2, 2012

not a good day

In fact I would go so far as to say it was an utterly rubbish day and i am struggling to find a positive for it.

IVs were started. lung function bad. weight bad. Starting on nutritional supplements to try and help weight gain. IV antibiotics already started and most definitely needed.

Falling out with fiance because I cant be positive. All I want is a hug and who knows when I will actually see him again, currently sat in tears on parents sofa.