Harriet’s Thirteen Month Update

I am so pleased to say we have had a great month health wise. Harriet has been so well, long may it continue. Now that she is one we have started giving her probiotics and an immunity boosting supplement. Now I can’t say for sure whether our recent run of good luck is down to them or purely coincidental but I won’t be stopping them anytime soon! Harriet also had her flu jab which may also have helped. We had quite a struggle to get her the injection as here in the UK most little ones have a nasal spray. Anyway, she finally got it in two parts, with approximately three weeks inbetween doses. Fingers crossed this keeps nasties at bay for her.


In terms of her development, Harriet is finally standing up! She is so fast on her bottom that our CF physios think she is quite happy with her current method of getting around so isn’t too bothered to try walking just yet! To try and encourage her to get up on her feet we took her for her first pair of shoes, so cute! She was an angel getting her feet measured and loved all the attention!


We attended a routine clinic appointment which went really well too. All of her medication has stayed the same. She is cruising along on the 75th centile for her weight and on the 91st for her height! We couldn’t believe this as neither of us are particularly tall so who knows who she’s got it from! I was a little disappointed as she had only gained just under a pound in weight since the last check up but I’m putting that down to her fussy eating stage. I say stage as I hope that’s all it is. Harriet will, at the moment, only entertain puddings! She will eat a little bit of her main meal but all of the sweet stuff. It’s a tough one, especially when you have an older child without CF who isn’t allowed a dessert if she hasn’t done well with her main meal. Answers on a postcard please.


Now for the biggie…SHE’S SLEEPING IN HER OWN BED IN HER OWN ROOM! Finally! My husband was home for a few extra days to attend Harriet’s clinic appointment and we decided to give it another go. The first night was a shocker, second almost as bad then the third surprisingly bearable. As a write this we are onto the fifth night and all seems well. I don’t want to say too much in case I jinx it though!


By the time of Harriet’s next update I hope to have some progress on her walking and I’d like to be able to say her fussy eating stage has passed but who knows, children are a mystery to me!

If you would like to find out more about cystic fibrosis and ways you could help click here.

Seven Easy Ways To Help CF This Christmas

With Christmas coming up I felt it was about time for another fundraising update. Sadly, these posts do not get as many views as others but they are what my blog is mostly for. I know money can be tight, especially now, so I have come up with a list of things you could do which do not involve a simple donation. Of course, if you would like to make a monetary donation please feel free!


1. Stamps

Who knew that used stamps could be converted into cash for cystic fibrosis research? So far, and about a gazillion stamps later, we have raised over one thousand pounds. Not bad, eh? Now is the time when all your Christmas cards are arriving to keep them to one side and send them off to the link below.

Used stamps

 

2. Clothing

If you are ever having a clear out of old clothes, shoes, bags etc, why not request a sack from the address below? Just make sure you choose The Cystic Fibrosis Trust as your chosen charity of course! The bags arrive in the post then you arrange a collection time that suits. I have done this many times now and it is so much easier than taking huge bags to places yourself.

Clothes for Charity


3. Christmas Cards

You are probably going to buy them anyway so why not order yours from The Cystic Fibrosis Trust? They have lots of lovely designs, I found it difficult to choose! They also have excellent value variety packs. I picked up a couple of packets as they were such a good price.

Cards

 

4. Online Auctions

Again, if you’re looking for some Christmas presents why not sign up to the auction linked below, organised by a lovely, fellow CF mam. There are some fantastic items up for grabs with the thrill of an auction thrown in too! All proceeds are going to The Cystic Fibrosis Trust.

(The link will take you to the Facebook group so you’ll need to be logged in to see it!)

Online Auction

 

5. Calendars

I know lots of people like to give calendars as Christmas gifts and these make excellent stocking fillers. Added bonus is that my girl, Harriet, appears in February! I have mine and they are just beautiful. All proceeds going to The Cystic Fibrosis Trust.

Calendars


6. Donate Whilst Shopping Online

Instead of going directly to a retailer’s website, click the link below first. Choose where you want to shop and then The Flutterby FUNdraisers earn a free donation. It’s totally free to use and your shopping doesn’t cost you any more than what you have spent on your chosen items. This even works if you reserve an item at Argos and then pay in store. On average each retailer will donate 5% of the cost of your shopping so donations will easily mount up. The Flutterby FUNdraisers are a registered charity working closely with The U.K. Gene Therapy Consortium raising funds for much needed research to one day help everyone with CF.

Shopping

  
 

7. Sign Up For Organ Donation

Far too many people with cystic fibrosis are waiting for new lungs. 1 in 3 people die whist waiting. Do the most selfless act ever and give the gift of life. Please.

Register
If you want to find out more about Cystic fibrosis and many other ways you could help click here.

 

 

Ten Things Every Cystic Fibrosis Parent Has Heard

Having a shock diagnosis of cystic fibrosis thrust upon parents is never going to be easy. While people mean well, I have found that in the beginning I just didn’t know what to say to people. When they enquired about my new baby’s health I felt awkward and struggled to find the words. Did they know? Had they heard? Most of the time, even now when people ask, I just say she’s doing great and very little else. In the same vein other people also feel awkward. I try to imagine what I would say to someone if they told me their baby had CF. I’d like to think I would try to say something fairly supportive but who knows unless you’re placed in that situation.

I am very lucky to have a great support network online from other CF mams and we have all recently discussed this awkwardness in terms of dealing with other people’s comments with regards to cystic fibrosis. So without further ado I thought I would share with you all the top ten comments made to us CF parents – all real. Some good, some bad and some downright hilarious! Enjoy!

1. ‘But they look so well!’

Ah yes, as if we have just made the whole thing up. I wish. Cystic Fibrosis is what is known as an invisible illness. Patients will always look well on the outside despite lots of internal problems, affecting many organs in the body.

 

2. ‘Will he/she be able to walk?’

Yep, again CF affects internal organs only. No physical disability at all.

3. ‘My brother’s friend’s, cousin’s, next door neighbour had CF. They died when they were twelve.’

Lovely. Just lovely. And just what you want to hear when you have a baby with CF. Hopefully, whoever said this was talking about something that happened a very long time ago when medicines and treatments weren’t as good as they are now.

4. ‘Has he/she got to have that EVERY time they eat?’

People with cystic fibrosis are pancreatic insufficient and before they eat something, if it has fat in it, they have to take medication called Creon. This helps to absorb everything in their food. It’s a right pain, especially when they are too small to swallow capsules and the contents have to be poured onto a spoonful of apple purée. Trying to work out how many pills they will need for different food items is also a pain. So comments like this will no doubt grate on any CF parent!


5. ‘So they have to have all this every day?’

Linked to the above in relation to the syringes full of different medicines babies have to have each day, not just once in the morning, but at night too.

6. ‘But they will grow out of it though?’

Sadly, no. Cystic fibrosis is a genetic condition which progresses as a child grows.


7. ‘They can just have a lung transplant then they will be fine.’

Ah yes, wonderful. A major operation with huge risks. Lung transplants are amazing but new lungs do not grow on trees. Despite a recent major push in the UK, lots of people are still not signed up to the organ donation register. I also cannot even envisage this for my child.

8. ‘I don’t know how you deal with it all, you’re all so strong, you’re inspirational.’

These are really lovely things to say to people but what most CF parents will say is that they are just doing what anyone else would do in the same situation. There is no choice; you have to deal with it and try to stay positive every day. CF children do look so well because of the many hours of medicines, care and treatments that parents do behind the scenes.

9. ‘But they won’t know any different as they’ve been on all the medication since being tiny babies.’

Great! Yes, they won’t know any different but we all wish things were different for them.


 

10. ‘How severe is it going to be?’

We all wish we knew the answer to that. CF affects everyone differently. I have read about twins who obviously have the same mutations and one is still going strong while sadly the other passed away at a young age. Who knows? But what I do know is that nobody is guaranteed a ‘tomorrow’ so enjoy every second!

If you want to find out more about cystic fibrosis and ways you could help click here.

Puddleducks: Not just a swimming lesson…

When I was recently asked if I would like to try some swimming lessons with Puddleducks there was no hesitation in my response. Yes, yes and yes! I have a few reasons but the main one is that I desperately want both my girls to be strong swimmers. Not only for safety reasons but also exercise. Swimming is going to be great physiotherapy for my youngest daughter, Harriet, who has cystic fibrosis. My own personal feelings towards swimming are not great. I remember being thrown in a pool at a young age and being utterly terrified which put me off for life! I can swim now, nanna style which is perfect as my head stays firmly out of the water, therefore, hair and make up don’t spoil ha ha!

Another reason for taking swimming lessons is to try and alter my eldest daughters perception of her wonderful three-year-old self. For a while now (longest phase in the world) she upholds the most sincere belief that she is THE BEST at everything in the world. Until now I wasn’t aware you could actually be the best at twirling, holding your spoon and trick or treating. So when I asked her if she wanted to try swimming lessons the response was, ‘I don’t need swimming lessons, I’m already the best swimmer.’ Hmmm. Now I don’t want to discourage this ‘can do’ attitude so I’m finding it hard to strike the right balance as I do not in any way want to knock her confidence. Having the belief that you are the best could certainly see you well in life!

After some discussion/bribery we managed to talk her into it. Apparently you need a swimming card to go on your aeroplane holiday which you can only get by going to swimming lessons – thanks for that Mr Corr! So the day arrived and Nancy’s lesson was first. She loves going swimming so was excited when we arrived to see all of the equipment that was out on display. She also wasn’t wearing her armbands either which was a first! At the start of the lesson Nancy was shown how to get into the pool correctly, something which we had never even considered but will definitely implement in the future.

The small group then started their lesson with a song and some movement in the water. Dad was in with her – I don’t know who enjoyed this the most. The children were then asked to blow bubbles in the water, again something Nancy has never done, to get them used to putting their faces in. She didn’t like this too much which tells me she needs more lessons as I do not want her to be scared to put her head underwater like me! The instructor was very keen to stress that should your child not want to do anything in particular they don’t have to. I firmly believe that some of my  swimming related fears come from being forced into going under water when I wasn’t ready!

Watching Nancy’s face as she swam alone without her armbands, just with floats either side was really priceless. She was so pleased with herself! She really enjoyed all of the activities, they really packed in so much into half an hour. My heart was in my mouth when they all lined up a metre away from the poolside and had to swim off themselves to the wall! Thankfully, dad didn’t let her (I was worried here!) and helped her get there. Seeing the other children doing this may have also made Nancy realise that maybe she does need some more swimming lessons after all!

Harriet’s lesson was some time after Nancy’s and due to extremely bad planning on my part she was absolutely shattered. Not a great start for your first swimming lesson! Again they started with a song and some gentle movement in the water which she seemed to enjoy but as the class progressed she just got grumpier and grumpier. Our fault completely, nothing to do with the lovely baby activities going on in the pool. She managed to complete some things, one of which was being totally submerged in the water. This is why my husband was in there with them as even watching poolside I thought I was going to vomit/cry!

I could sense my husbands frustration so when he opted to get out ten minutes before the end I couldn’t really blame him. Lots of lessons learned that morning. I should have booked the girls lessons on separate days. Never take a baby swimming when they should be napping and a swimming lesson for Nancy was also a lesson in humility for her. Win win I say!

I would definitely recommend swimming lessons with Puddleducks so check out their website below.

http://www.puddleducks.com/

If you want to find out more about cystic fibrosis:

http://www.cysticfibrosis.org.uk/

 

 

 

Harriet is One!

Well, what a year. The most difficult we have ever faced, filled with the most bone-aching pain but also the most joy. Welcoming our adorable little girl into our family has just been total perfection. Now I love to celebrate every little occasion so I was concerned at just how I would deal with Harriet’s birthday. It is desperately hard not to think back to the day she was born and then the subsequent horror that unfolded. I knew the day itself would be brilliant but it was the days afterwards which weighed on my mind. All the memories flooding back, such a confusing, train wreck of a time.


All the more reason then to celebrate a triumphant year for our girl. The manner in which she deals with everything that cystic fibrosis has thrown at her is just unbelievable. Three major operations, regular hospital trips, daily physiotherapy and countless medications – like water off a duck’s back to her. (Although she is not liking her medicines at the moment!) As she grows she needs higher volumes of everything and her prophylactic antibiotic does not taste very nice. Lately she is prone to letting it just fall straight back out of her mouth and to be quite honest I don’t blame her. I could taste it for hours after I tried it, poor baby. The only way to get her to take it is to deliver it in tiny amounts very slowly which is not great if you are in a hurry to be up and out with two little ones! In the future she will take all of her medicines in tablet form which will hopefully be a little easier.


For her birthday we invited family and friends to our house to help celebrate and eat cake. We were, again, blown away by the kindness and generosity of our nearest and dearest; Harriet was truly spoiled. She seemed to really enjoy herself too, as she sat all day happily playing with all her new toys. My lovely friend Marie, who was part of Team Corr in The Great North Run, made her such a gorgeous cake too which was beautiful; her skills are wasted as a teacher!

In terms of her development Harriet is doing so well considering she’s had a few setbacks. She is now bum shuffling along at quite a speed – apparently she gets this from her dad who also never crawled! She has seven teeth which I think have caused her some upset at times but nothing major. She loves to scream as loud as possible and has the most infectious laugh. Anything her older sister does she finds hilarious. That for me has been one of the joys this past year, to see the interaction between the girls, to watch them laugh and play together just melts my heart. They idolise each other, it is true love!


Last year we missed out on going to our local illuminations and Halloween so this year I was determined we would do both. The day after Harriet’s birthday we went to the seafront and had such a great family night. Harriet was well wrapped up in her new snowsuit and got to breathe in the sea air which is reputed to be beneficial to those with CF. (I just need to win the lottery now to get a house on the beach!) We are going big for Halloween; costumes were ordered months in advance and more decor has been added to the already mountainous array of tat in our house. Harriet was actually discharged from hospital on Halloween last year but it was late in the evening so we missed all of the fun. I did, however, dress her up in the hospital which the nurses all loved.


Without getting overly emotional, I can’t believe what has happened to our little family but I know one thing for sure is that we are so lucky and so grateful to have two beautiful little girls to share our lives with.