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Sunday, 29 March 2015

Our Morning Routine

At the moment I am up at approximately 5am with Harriet and more often than not her big sister is up at the same time too. The difference is that Harriet will go back to sleep; Nancy will not! Lately we have had lots of bags coming unstuck on Harriet’s tummy overnight so to wake up and see she’s covered in poo is a nightmare. I know there’ll be no chance of going back to bed as it’s quite a process to clean and redo. I’m sure every parent reading this has been there though, and there’s not much difference to this and a nappy explosion. I just have to be well prepared with pre-cut bags and have all the products ready and set up. Good job I have early starts as we do have a lot to fit in, starting with breakfast for Nancy and I…

Sleep deprived and desperate!
I always have the same thing every morning – I’m a creature of habit, although I may switch up the topping depending on what we have in. Mine is porridge with half a banana, cinnamon and honey. I make sure I get plain porridge with the only ingredients being oats. I try to keep it simple. At the moment I am adding a couple of golden berries that I picked up from Costco which I’ve just joined. (It’s amazing. Why didn’t anyone tell me about this place sooner!?) The packet claims the berries are anti-fatigue which I am slightly sceptical about but anyone who is a parent will know how desperate things can get. I also like to have a mug of hot water and lemon before I eat my breakfast. I tend to drink this while I am sorting Nancy’s breakfast, putting out dog food and water for our lovely cocker spaniel Arthur, and preparing Harriet’s medicines. I am trying to be healthy but I think it is going to be a long road to my pre-pregnancy jeans!

Depending on how Harriet is she has six syringes of various medicines, all with different amounts, antibiotics to keep infections at bay plus additional vitamins and salt. She has four bottle feeds a day alongside breastfeeding, and we have to inject salt into each bottle as well as administering it orally twice per day. Harriet has salt supplements as her body’s cells don’t pass salt and water which is what would normally happen for us. The water thins down all our mucus but as hers doesn’t get diluted she is left with the thick stuff which can be a breeding ground for bacteria and infection. We have to keep all the syringes sterile too. 

Every time Harriet has any milk she has to take enzymes (Creon) to help her absorb all the nutrients as she is pancreatic insufficient. To help Harriet take these I use a pouch of apple puree. If anyone hasn’t spotted them yet, Aldi have started doing their own version which are a lot cheaper than Ella’s Kitchen where we were having to buy them in bulk. The contents of a tablet are poured onto a spoon full of apple sauce and she takes it that way – I got some funny looks doing this when she was a tiny baby! When she is older she will swallow potentially 30-40 of these tablets per day. 

Once the medicines and bottles are prepared I eat my breakfast then start Harriet’s treatment. First thing is physiotherapy, which we only do if she is unwell. She has two twenty minute sessions a day to help move the mucus in her chest. How this goes is anyone’s guess – I have actually managed to do the whole lot while she’s been asleep to the antithesis of hysterical crying from the get go. Once the physio is done, next up are the medicines. Again this can go really well or really badly! There are certain ones, mostly the Flucloxacillin and the salt, that she hates and will try to spit out. We have found that taking our time and injecting tiny amounts at a time help Harriet take it all in. During all of this Nancy is usually very good, and will just sit and eat her breakfast and watch TV. 

Once the medicines are done all of the syringes have to be cleaned and sterilised for use later on that day. Finally, after all this, she is generally fed up and hungry so she has her bottle of high calorie formula (Infatrini Peptisorb) which washes down the contents of two different tablets (Creon and omeprazole). As I am typing all this it makes me realise how different things are for Harriet, but for us it has just become the norm. 

Most days this all happens smoothly and we can get ready and head out somewhere. (FYI afternoons are best for us if anyone fancies a playdate!)

Please comment below if you have any questions or get in touch via my social media profiles Facebook or Twitter.

To sponsor Chris Emily Marie.

Sunday, 22 March 2015

My Month - March 2015

My Month – March 2015

So... March…
March was a different month altogether for me. I launched my blog on the first and have, at times, not been able to keep up with all the messages from people near and far. To date, almost 4000 people have visited my page and read my blog. I thought maybe a few people would cast their eye over it; friends mainly, and those I know who would read it out of curiosity. So to have readers from all over the world is insane!
As someone who has virtually shunned social media for the last three and a half years I feel that I’ve now almost done a 360 and am sharing, tweeting, retweeting and liking non-stop. Of course this all has a purpose for me. Some of the best messages I have had are from those who actually knew nothing about cystic fibrosis (nothing wrong with that - neither did I!) but have said they would take time out of their day to go away and read up on it. I’m almost welling up just thinking about it. And all the people who have made themselves a Bloglovin account (link top left of page) to follow me – thank you! As someone who has read blogs for a long, long time it’s pretty crazy to know people are reading mine!
I have been able to share experiences with others who have been there and got through what we are going through right now and hats off to them. Truly remarkable people, all so willing to answer my na├»ve and probably ridiculous questions. I have joined a couple of brilliant closed groups on Facebook and I am learning so much every day. One of the sad things about CF is that sufferers can’t ever meet up because of the risk of cross-infection so the online community is massive and extremely helpful.
We attended a routine CF clinic appointment for Harriet which always causes me a little bit of worry. I have heard people refer to cystic fibrosis as an invisible disease as there are no outward signs of it – a sufferer looks fine and dandy appearance wise. However, the problems are all on the inside and only check-ups, cough swabs, x-rays etc can highlight what is actually going on. Thankfully there was nothing to report – sounds dull but these are the ones we are after. She’s gaining weight steadily and the team are all happy with her so that’s good enough for us!

On the way out we spotted the surgeon who would be performing her stoma reversal operation and like two idiots we decided to approach him and ask if he had an update on when Harriet’s operation was going to be. After a very painful and awkward conversation (he clearly had no idea who we were or what we were going on about!) he repeatedly said to just call his secretary. Following his advice I rang the next morning and to my utter surprise I was asked whether I just wanted her booked in now?! Had I known this earlier I would have contacted them much sooner so maybe it does pay just to look like a berk and keep on asking/ringing/borderline stalking healthcare professionals.

So there we have it: the operation is booked for Friday 27th March, which coincidently is my lovely sister’s birthday so that can only be a good sign.
We have been told to expect a week in hospital so I am hoping to be home for Easter weekend. I know that this is the best thing for her. After this there will be no more operations and we are just left with keeping up with her CF treatments. I am still totally and utterly petrified though. I could probably learn some lessons from Harriet who will no doubt take it all in her stride. It is going to be hard for me to be away from Nancy for so long too even though Chris will bring her up each day to visit. Plus once the pain of the operation is over we face the days of recuperation which will be long, dull and drawn out. If anyone has any survival tips for me they would be much appreciated!
In other news, the BBC recently announced the UK’s Eurovision entry and we couldn’t believe it when we learned that the girl singing has cystic fibrosis! I come from a family of Eurovision fans and we have always made a celebration of it in our household so this year is going to be even better for us. The girl is called Bianca Nicholas and is a great singer. Not too sure about the song but they always end up growing on me, I convince myself we will win, then go to bed in a massive huff without fail every year. Maybe this year will be different…
Finally, following on from last week’s post, Chris has managed to stick to his training (ish) for the Great North Run – many thanks to all those people who have sponsored him, and to those who haven’t got round to it yet please do! All the links and what not are below.
If you have any comments, questions, hospital survival tips please get in touch via my social media pages Facebook or Twitter.

To sponsor Chris Emily Marie.


Sunday, 15 March 2015

Your Money or Your Stamps...

The Stuart Gordon Fund LogoPeople never fail to surprise me. The amount of offers of help and support I have had in the last few weeks since starting this blog has been nothing short of incredible. So much so that this post which had been planned for a few weeks’ time had to be brought forward to now. Since Harriet’s diagnosis my family have already managed to raise almost £3500 in a few months. Oddly, it all came about only a few days after we had been discharged from the hospital.

I received my nightly phone call from my Dad, and instead of the usual run down of shopping bargains he had managed to buy that day, he told me to watch Channel Four news. The item featured a breakthrough study into cystic fibrosis and that a potential cure could be found. Naturally we were sceptical as we had no idea at this stage whether this kind of news was reported on a weekly basis but it certainly got our attention and warranted further investigation. 

In summary Dr Anil Mehta and his team had tested two drugs on ten patients of whom nine showed almost no symptoms of CF while taking this medication combined. (Anyone interested in the full version, click here.)  Nine out of ten isn’t a bad result, is it? We asked our team at the hospital on our next visit if this type of news item pops up regularly and they didn't seem to think so. Another positive. It is, however, very early days for this study and to take it to the next stage the research needs more money.

My family got in touch with Anil Mehta who then passed on the details of The Stuart Gordon Fund. If specified, any money donated to this charity can go straight to Anil Mehta’s research. The charity does do lots of other fantastic work in their community for CF patients and sufferers of other chronic illnesses but anyone wishing to donate to the research side of things can do as long as it is made clear when donating where you want it to go.  Another, easier way to help is to save stamps. Not so easy for a household; I know we get very few letters with stamps on these days but we have, however, collected a lot from workplaces and churches. Chris works for Siemens who have been unbelievably supportive to our family at this difficult time and they save stamps for us, as does the school I used to work at. Citadel are the company who will take your used stamps and turn them into cash for The Stuart Gordon Fund. Anyone who knows me or who is local can pass stamps directly to me or members of my family - I promise to make a cup of tea in return! Alternatively anyone harbouring an old, unwanted stamp collection from days gone by could send that in too!

Another really simple way to help is to donate your old clothes. Instead of getting rid of all our old stuff in the odd bag we get through the door I have signed up here. It takes two minutes - every little helps!

My husband, bless him, is going to do the Great North Run this year for The CF Trust. Apparently The Corr family is blessed with a running gene; some family members represented the UK and were invited to trials for the Olympics. Chris does not possess this gene. That alone should persuade you to sponsor him. He has started his training and this picture was taken before his first outing - he's going to kill me for publicising it! My sister in law and close friend are also running so I will link their JustGiving pages below too.

Aside from monetary donations, in five months my family have sold their artwork, held coffee mornings, given up alcohol for a month, donated proceeds from a gig and held a hugely successful quiz night. All absolutely brilliant and we could not be more appreciative and thankful. We must keep going though and continue to think of ways and means to raise money, and keep hoping that one day this awful disease will no longer exist.

If anyone reading this wishes to get involved do not hesitate to get in touch via my social media links. You can also help by simply sharing my blog posts on Facebook or Twitter. You can also subscribe to my blog here so you don't miss anything. Finally, if anyone has any ideas for successful fundraising events I would also love to hear from you. Huge thanks!
If you would like to sponsor one or all three (!) of the following:
Chris Corr
Emily Corr
Marie Nesbitt