Time flies when your screaming!!

So the past couple of weeks have been busy and exhausting. Typically Bella managed to get a chest infection and then a cold. It's tiring enough having one ill person in the house hold yet alone two. But I always think positive that I'm lucky to have a well child in general. 

So the past 8 days we have been having to give madam antibiotics. How on earth do doctors really think a child will consume this medicine. I know for a fact I would refuse it along with many other drugs I have refused over the years. "Banana flavour"?? yeah of course it is,spot on,that's exactly what it tastes like. In case you don't know me well,that is me being sarcastic. Even the smell makes me gag so how on earth am i meant to get a 2 year old to swallow that 3 times a day.Cobblers!! The first dose is easy- "oh yeah Bella look, Calpol,yum!!" and straight after the spoon goes into her mouth she looks at us like we have just pulled the legs off her woody doll or flushed her blanket down the toilet. That's it then. She knows. The secrets out,its not Calpol and she will suspect every medicine spoon that is bought close to her lips without inspecting it first and screaming!! If its not the lovely purple sweet tasting Calpol then there's no chance!

This resulted in doses being mixed into her yogurts and deserts. Mainly yogurts, and fruit/custard pots. It seemed to work for a day or two but she knew. This slowly resulted in us having to feed the yogurts to her rather then her doing it herself. Almost like she was punishing us and wanted us to feel bad with every mouthful she painfully had to swallow. Then it has evolved into her not even eating her yogurts. The one food in the world that she loves and is guaranteed to eat however she feels is now a no go. Big distractions are required to feed it to her. "Look Bella - a plant!! ooooooohhh lets just put it on your tray for you to slowly pull apart and kill while we feed you" and " Bella look a baby laughing and falling over on you tube". The best one was on Sunday when we had to get a 5 year old to feed it to her. This worked perfectly,almost to the point i considered adopting another child. Note to Dr's or medicine making people - make better tasting medicine you fools!!

Medicine ends tomorrow and she seems to be better - Thank God!! Hopefully she will be back on track in her relationship with her yogurts some time soon!

Its hard for any mum when a child is ill but it was rather exhausting last week. Impossible to get rest when shes feeling crappy and only wants mum or dad so its almost impossible to get a break. Now she seems to be back on track and easily amused for 5 minutes then moving onto something else. Back to playgroup next week, yeah!!

So since madam has been better we have been enjoying the sun and had a nice Easter weekend (mainly consisting of the normal family gatherings etc). My Iv antibiotics have been changed so hopefully I will have a little bit more energy to last the rest of the holidays. Since the false alarm a few weeks ago I seem to be appreciating things alot more. Little things mainly.  So I have enjoyed the extra time with Bella and I value every minute I spend with her. Even if its telling her off for drawing on the wall with my eyeliner, or gasping for breath as i have to carry/drag her away mid tantrum, watching the expression on her face as she learns something new, says something funny, trumps on the wooden floor like a sniper riffle, or just gives me a hug. Its amazing being a mum and I hope I carry on to be for a long time.

To be continued.......

Don't Judge A Book By Its Cover!!

So my next post topic has been abit of a challenge for my scattered brain. A few subjects spring to mind but making them worthy of a post is the problem.I'm one of those people who usually has something to say but on this blog it's easier said then done!!
 So I'm currently sat in the local pubs wacky warehouse slowly gaining a headache from very over exited,sweaty,static haired, screaming children. It seems to be a good way of burning my mini me out with minimum effort from me (due to her being chased and watched constantly by Kierran while i drink tea and type my blog).
 There's alot of mums here which all appear to be around the same age group and seem to all know each other. I always smile and where appropriate will say something but it's usually returned with a glare, fake smile, grunt and a swift look up and down. I seem to be an outsider or the enemy for some reason. Either they must speak some mummy's language I missed a class on or i suspect I'm being stereotyped the Classic "teenage mum". Is this necessarily a bad thing? Why is this worthy of a glare and pure ignorance?
 Alot of my family say I shouldn't care what other people think but deep down it annoys the hell out of me. I find myself even trying to buy clothes that would make me look older,which doesn't really seem to work out! On average with what people say I must look between 16 to 20, and have done for years!! when I'm older it would be great of course to look younger but currently it's not due to being treated different to another "well" 25 year old parent.I wonder what these mums think of me when they see me with my daughter and painfully change the expression on their faces. I know for a fact it's not "oh she must be a good mum" or "sometimes things aren't always as they seem". I dress my daughter nicely,have a nice home and I push my health to the limit everyday (and bank balance) to give my daughter everything she needs.

Bella (with her crazy bed hair) using my oxygen tubing as a skipping rope. Highly amusing and has multiple purpose!

With the glares, ignorance and judgement is it any wonder I find it hard to wear my oxygen in public?I even hate wearing it in the privacy of my own home,yet alone giving people the satisfaction to stare at the sick girl. The few occasions that I do wear it (in public) I have had rather rude responses. If I happened to see a person in a wheel chair, I look away immediately and get on with what I'm doing because I wouldn't want them to feel how I feel for one second. Why cant everyone do this? Rather then lock their eyes in your direction and usually catch flies with their mouths wide open.. This of course leads me to believe that some people are ass holes!
 I can't even park my car without getting grief.I park on disabled when I can and always display my badge. I often find people (on foot) will purposely walk past my Windscreen to see if I have a badge because obviously I need to be in a wheel chair to park there! I even pulled one man up about doing this.I told him I had a disabled badge so there was no need to check.to which he replied "disabled.......I'll make you ****ing disabled". Of course I very quickly locked myself in the car and laughed at him like I wasn't bothered.which of course I was,and unfortunately wasted my tears on the twit.I have had the odd person requesting to see my badge, like I have borrowed it off a relative or something.which is annoying but also quite satisfying to see their faces when I prove them wrong!
 If I went round wearing a t shirt saying "I have Cf, I'm 25, I have a daughter and am on the transplant list" would I be treated differently? Unfortunately.....I think so.
 I think getting asked for ID can be a problem for many people but being asked when buying paracetamol is ridiculous, although I did find that rather amusing. Apparently appearances don't matter and its whats on the inside that counts, but I beg to differ when my appearance seems to cause me so much grief!

Although I do use looking younger to my advantage on some occasions. If a sales person, or a Jehovah's witness (for example) annoyingly knocks at the door I innocently tell them my parents are not at home and swiftly shut the door. Also for a long time I managed to get away with buying a child's train ticket or bus ticket for a good few years past the normal age.
 It's the one good thing yet bad about Cf, is that we can look like any other person without Cf. People with Cystic fibrosis (sometimes called an invisible illness) have bad absorption which causes poor growth.
So on a Me update, after last week the days have been abit of a muddle but all back to normal just about. Although I'm rather jumpy everytime the phone rings again.Just like i was when i first went on the list a year ago. My chest is abit more "fruity" then usual so I'm struggling abit more. Lots of bed rest where i can of course and drugs to avoid the dreaded hospital admission!! Took Bella to a speech therapist yesterday which was interesting. So have been taught the best ways of getting her to start saying proper words, which is needed with a big dose of patience.
Now i just have to figure out what we are going to do to keep her occupied for two and a half weeks due to no playgroup or nursery. Will and Kate's wedding is costing me an extra £26 of nursery fees on top of good Friday which will be closed!! Any ideas people,let me know!!

To be continued......

Ready.....Steady......No!!

Well after doing all my pages first I thought i might struggle with my first post on here. But after the day i had on Monday I should have something i can talk about!!

In the words of my daughter Bella - "Ready...Steady...No!!" pretty much sums that day up!

The thought of doing a blog had crossed my mind a few times over the past year or so but I always managed to put myself off the idea. I thought people wouldn't read it or might think its silly but after a slight push from a friend i thought sod it, I will do it! Hopefully it might help someone who needs a question answering maybe. But bearing in mind I'm not a person to moan about my health, i just get on with it so it was rather odd writing about it with the thought of people possibly reading it.

So basically I'm 25, have a 2 year old daughter, have Cystic Fibrosis and am on the transplant list waiting for either a lung transplant or heart and lung.

Yesterday i got my first "call" as such from the transplant team at 5.30am. I didn't answer the phone at first, due to being half asleep and confused as to why i was being blinded by my phone at half 5 in the sodding morning! I called the number back and was told there was a donor available for me. Like a spare car part or something. I cried and starting typically coughing at the same time, not easy when your trying to have a conversation on the phone! I was told to get ready and there would be a car outside my house to take me to the hospital at 6.15. I told Kierran (my partner) and he quickly rang his mum who then got sorted to come and look after Bella. After obviously panicking I got my things together and gave Bella lots of hug before leaving in the ambulance. I was told we didn't need to rush yet so it would just be a steady drive. Until we hit 3 lots of traffic, then the lights and sirens were put on which i did enjoy (just a tad!).

On arrival I was greeted and shown to my bed. Then bloods were taken and various other tests were done, all of which came back fine. I was then told that the tests were being done on the organs to see if they were suitable for transplant and it was just a case of waiting to hear back.

Kierran finally turned up at that point as he was about half hour behind due to him waiting for his mum to arrive. We were told there had been some delays in the testing, and once one person makes a delay then it backs the whole process up. They thought it would be around midday till we would have an answer if the lungs were suitable.

So I waited and waited then waited a bit more. They were very confident it would be a good outcome. My Dr came and signed consent forms and an anaesthetist was sent to see me so I was ready to be taken to theatre straightaway if the lungs were good stock!

At 2pm I was finally told I would be going home. The lungs on final review weren't good enough due to some damage at the bottom, so they were not given the go ahead. I was upset and annoyed. I was also shocked that i was upset and annoyed. All i wanted, the whole time I was there was to go home to my little girl and get some sleep. I was physically and mentally exhausted. Waiting that long had made me get my head around it (just about) so it was mixed emotions when they said no.

So it was back home and back to waiting again. At least I had a test run in some respect and i got further then i thought I would. I didn't think if I got a call I would be able to go through with it.

So by the end of it the day was pretty crappy, but got to carry on and keep my fingers crossed that next time it would be a better outcome. I'm not quite sure i could cope mentally going through that over and over!

The past couple of days i have been totally out of sync so I'm now trying to get back on track. So on that note i will finish this post for the time being.

To be continued........