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 Facebookor Twitter.

To sponsor ChrisEmilyMarie.

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

Harriet’s Five Month Update

Three Weeks

I have decided to follow up last week’s post with another detailed Harriet one simply because I hope(!) people will want to know how she is doing today. As I have previously mentioned, they won’t all be about her and cystic fibrosis – I promise!  A LOT has happened in the last five months so I will attempt the short version and condense it as best I can into one post.

The weeks following our discharge from hospital were a whirlwind to say the very least. Every day we had a different health care professional come out to our house. Harriet has a nurse, dietician, physiotherapist and social worker so alongside your usual midwife, GP and health visitor checks we were inundated. We had to become fast friends with our local chemist as the list of medication we need on a weekly basis is mind-boggling. We were also facing the challenge of learning to care for her stoma. I couldn’t even bring myself to do it at first, and if her bag showed signs of coming away or leaking and Chris wasn’t around I would become totally overwhelmed with panic. Chris did all the bag changes for a long time – he’s an amazing dad. Though these days I could actually brag that I do the best ones! I could do one in my sleep really and, to be honest, I probably have!
One Month
Health-wise, Harriet was fine until she was seven weeks old and developed a cough. As we don’t have a clue what we are dealing with, Chris ended up in A&E with her in the middle of the night. She was checked out with no major worries but after a few days there was little improvement. Fortunately she had a routine check-up at the CF clinic and, unfortunately, it was a chest infection. She was rushed off for an X-ray on her lungs and, upsettingly, we were told to hold her down in case she fussed or cried. Of course she didn’t. She dealt with it in her usual laid-back manner; a few smiles, gurgles and giggles for the radiographer which lessened the tension and made their job much easier. Thankfully some extra antibiotics were prescribed and we avoided a hospital admission. It is completely normal for Harriet to catch coughs and colds like any other child. If Nancy had a sniffle at that age we wouldn’t really think much of it but now any sign of a cough can be worrisome as an untreated infection can cause irreparable lung damage.
Two Months

When she was poorly she naturally lost some weight, and it was at this point that the dietician introduced a different supplementary feed for her – a high calorie milk to consume four times a day. I was breast-feeding but had been able to give Harriet a bottle which was a huge achievement as I could never do this with Nancy. I had racked up that many hours on the breast pump during our initial stint in hospital that I actually came away with a huge sack full of the stuff, and had to clear out my freezer to store it all. Chris jokes that I must have been a wet nurse in a past life!

Morning Medicines

Everything was now focussed on Harriet putting on the pounds. At five months she is 13lb and on the 25th centile. It doesn’t sound much but when you factor in having major surgery then being poorly she has actually done really well to catch up this much. Her weight has continued to go up steadily; so much so, in fact, that in January the surgeons were so pleased with her progress that they gave the go-ahead for her stoma reversal. We had hoped it would have been over and done with by now but the hospital waiting lists dictate when it will be. Harriet has had the pre-op procedure, probably not the most pleasant of things to endure but it didn’t bother her in the slightest. Like any other mother I am dreading it but it will be the end of that chapter and we can just focus on her CF treatments.

Three Months

Sometimes it feels like we are at the hospital on a weekly basis. I feel for Nancy as she often has to come with us, and does so well to sit for so long without complaint. Chris uses holidays for hospital time which makes me sad. Chris and I have only been out together once for our wedding anniversary, and even then we were five minutes’ drive from home and were gone for two hours at most! It may sound ridiculous but until she has her stoma reversed we can’t really leave her for long with anyone. Of course we could show them how to care for her but as her operation could literally be next week there’s very little point.

Four Months
Nothing will ever be the same again but I know we can deal with it as best we can as a family. On the flip side we have the most beautiful, happy and contented baby. I used to joke throughout my second pregnancy that this was going to be my ‘good’ one and for once I was right. And by that I mean well behaved! We can now look back and laugh at the completely crazy time we had with Nancy and have come to the conclusion that she just really did not like being a baby!
In terms of development, Harriet is now starting to grab and hold toys, trying to sit herself up and has really found her voice. The one thing I can’t get over is just how smiley she is. She is always so happy and just an absolute joy to have.
Five Months

I plan to do monthly updates for her and hopefully the six month one will involve good news about her operation.

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