A Day in the Life of my CF Baby: Fifteen Months Old

Disclaimer: I would just like to point out that at this early stage in Harriet’s life I am well aware that we are currently on minimal medicines and treatments. I know that over time this will increase as cystic fibrosis is a progressive disease. Also this is our experience, hence the title, MY CF baby, and everyone does things differently. The point of this post is to show that CF doesn’t stop our little one having a normal life, something I thought wasn’t possible when she was first diagnosed.

So I had this great idea that I would do a series of ‘day in the life posts’ at different stages of Harriet’s development. I planned to start with a day where she was in good health and what happened? Yep, she got sick. So I thought about scrapping the whole idea but then after some thought decided to go ahead with the day I had chosen as it is real life. Also, I had no better ideas! Maybe some parents will disagree with my decision to take Harriet out and about while she is under the weather but life is for living and she had a fun day with her family…

 

Thursday 28th January 2016

1.20am Starts coughing. Great. Harriet has been out of sorts for the last few days. Off her food, grumpy, not sleeping properly, bright red cheeks, snotty nose and coughing. Sounds pretty standard for a baby’s first few years but slightly different for us in that she has cystic fibrosis. Every cough is a worry. I had rang our team as soon as she started presenting cold like symptoms but was advised to give her to the end of the week to see if she could fight it off herself. Over the first year Harriet has had so many courses of extra antibiotics I’ve lost count. On a positivenote she hasn’t had to be admitted to hospital for IV’s as she has always responded so well to extra orals. After trying and failing to settle her back off to sleep I try her in our bed which results in another failure. After a few rounds of musical beds, a lot of dummy throwing and pacing up and down she finally goes back to sleep at 3.30am.

5.30am Wakes again. Foolishly I think she will go back to sleep after being up for two hours in the night; nope, she wants up. I try to leave her to cry, timing it on my phone to five minutes max as this is about all I can stand, and I also have neighbours! I cave and bring her in and let her have the iPad. She sounds chesty so at 6.30am I decide to do her percussion physiotherapy while she watches Peppa Pig.

7am My eldest gets up and we head downstairs to have breakfast. I start by making up Harriet’s morning medicines. Fortunately it is her lighter day and only have five syringes to prepare. Tomorrow morning she will have seven and judging by how she is now I’m betting by Saturday we will be adding two more to the mix.

I tried to give Harriet her creon and omeprazole which we sprinkle on Apple purée before her breakfast but she refuses, pushing my hand away, spilling the contents of the pills all over. Going to be one of those days. She really is never like this so it is quite stressful to say the least. She is usually the happiest, most compliant little thing! Weetabix refused, banana thrown onto the floor and I give up. Time to get ready.

9.15am Harriet falls asleep on the way to playgroup, what a surprise! I end up sat in the car to let her catch up, make my weekly call to the chemist to order some of the medicines we are running low on.

10am She wakes up and we go off to play! For the most part she was happy as Larry, bumshuffling all over, playing with her sister and cousin. There were grumpy moments but a lot less than there would have been if we had stayed home that’s for sure!

  
11.30am Off to grandparents’ house for lunch. My mam had made a lovely dinner of mince and dumplings with mash, veg and gravy. Harriet refuses again. This is getting ridiculous. Afterwards she was offered a rusk and she did eat some of that then Grandad cracked open the milk chocolate buttons and sure enough she managed to eat them!

  
2.00pm My sister and I head to a local soft play with the girls. It is brand new so lovely and clean which pleases me! After last night’s escapades Harriet falls asleep in the car again. In fact she is so zonked I manage to carry her in without even waking her and she stayed asleep in my arms while her sister and cousin played.

2.30pm Harriet wakes and has a brilliant time at the soft play. At one point she was crawling up the slide – she doesn’t do crawling! Up until now she has always bumshuffled! Lots of physical activity for her bouncing around all afternoon; great physio!

  
4.00pm We head home. Harriet has her second lot of medicines before her evening meal as she goes to bed so early, being so young. Three syringes as a starter before some cute mini hotdogs to eat. She did actually give these a go but was way more into the tomato sauce! She then polished off some rice pudding which put me at ease a little. At this point as long as she is eating something I’m happy.

  
6.00pm After a bath and getting ready for bed Harriet has another twenty minute physio session while watching Peppa Pig. As annoying as it is, it is the only way I can get her to lie still for any length of time so needs must! Harriet then has a 200ml bottle of cows’ milk which she drank all of, smiley face. She actually fell asleep whilst drinking it so I had high hopes of a peaceful night!

7.15pm First wake up – she has only been asleep twenty minutes, if that! It’s going to be another tough night and I will be making the call to the hospital first thing. Whether it’s teething or a cold I am pretty sure by the way she is coughing now that CF is playing its awful part. Fingers crossed for her but in the meantime we continue to fight and raise funds and awareness. Please help us.

To find out more about cystic fibrosis and ways YOU can help click here.

 

Tiny Town, Newcastle


A few weeks ago I was contacted by the lovely people at Tiny Town to see if we fancied trying out their brand new attraction for little ones. Funnily enough it was already on my lengthy list of places to visit so I immediately said yes! As ever, the British weather (about one millimetre of snow) put our first planned trip to a grinding halt along with all our roads, but we got there this week much to my children’s delight! Now, the thinking behind this is a house which has been converted into a ‘Tiny Town’ so children have a vast array of areas to explore within the town. Sounds like such a simple idea and one I simply cannot believe no one has already put into place in the North East.

 


Situated just outside Newcastle City Centre you might think that on first approach you are in the middle of a housing estate and are heading in the wrong direction completely but no. Eventually after lots of wrong turns, entirely my fault – well I’m actually blaming my phone’s Sat-Nav – we arrived. We had planned to go a little earlier before our play session began at 11.30am so we could check out the cafe too as we had other engagements that afternoon. As Tiny Town only opened in December of last year it looks perfect. So bright and clean which I guess is what you would expect; however, from chatting with the owner it was great to hear that they plan to have to decorators in monthly to keep things looking sharp. Such a good idea as I have spent way too much time in snot encrusted, worn down soft play areas!


The cafe did not disappoint and we had some beautiful rainbow cake with added cream and sprinkles, as you do. A nice addition was a reading corner with a good selection of books and comfortable seating for the little ones. Anyway, after our cake it was on to the main event. To be honest we had a hard time holding the kids back as they just couldn’t wait. In fact my four year old faked two toilet trips just to get a sneak peak of what was in store! There are cute pegs and lockers to store your outdoor things in; I especially loved the no shoes rule – every CF Mam’s dream!


I have two girls one aged four and the other fifteen months. My eldest made a beeline for the beauty salon and was in her element. My fifteen month old got to bum shuffle around after her really quickly so was also in her element! We stayed there for quite some time; I had expected her to rush from one thing to the next so quite a surprise. Being a self confessed make up junkie I was chuffed to see the addition of make up brushes in the salon and even more chuffed watching my little girl use them on the dolls! Nice touch.


Next up was a trip to the doctor. Each area has so much to do from props to dressing up so the little ones can really get into each role. Aside from the beauty salon, my girl shrieked with delight when she discovered the theatre area as she is obsessed with being on stage at the minute. Dragging props from the restaurant she put on a full show of Cinderella much to the other parent’s amusement! The level of detail in each area also really impressed. The supermarket is well stocked and when Nancy got her hands on a shopping trolley she was over the moon. When she had filled it with as much as she possibly could it was lovely to watch her take it to the till and interact with another little boy who had assigned himself the role on the check out!


Sessions last an hour and a half which I think is just right though my daughter would definitely say otherwise mind! There is a half an hour gap between sessions starting so the whole place can be tidied and restored to its former glory. Can someone do this in my house please?! From chatting with the owner it is clear that so much work has gone into creating a very special environment for children at Tiny Town. They have worked closely with early years practitioners to create something really special. Numbers are limited in each session so you know that your children won’t be waiting around to try things and there are no overcrowded areas. The only downside for me was the distance as I live in Jarrow; not far in the grand scheme of things and now I know my way I will certainly be going back… I had to promise anyway!

 

For more information and booking click here http://facebook.com/TinyTownNewcastle

 

Harriet’s Fifteen Month Update

We have just got back from a routine CF Clinic so now seems like the perfect opportunity to let everyone know how Harriet is doing. I am so pleased to say it was another great check up. In terms of her growth she has gained another pound putting her up to twenty-two pounds and still cruising along the 75th centile for weight. For those who don’t know, Harriet had been on the 9th centile for a long time after her surgery when she was born so she has really made remarkable progress. Every time we attend a clinic the doctors always seem genuinely over the moon to see her as she is now and comment on how bad of a start to life she had. Length wise she hasn’t grown much, one centimetre gain but remains on the 91st centile for her height. I actually look forward to the day she can just stand on the scales herself as this morning she was not happy being woken up from a cosy snooze to then being shipped straight off to be weighed and measured!


I don’t know if this was a contributing factor to her mood for the morning but as soon as the physio walked in the room she went from happy baby, playing with toys on the floor to a terrified, screaming one trying to climb on my knee! This shocked us a little as we have always been so proud of the way Harriet deals with all of her checks. The only thing I can think of is that she had routine vaccinations earlier this week and did not like them one bit (who would?!) and the physio’s uniform was similar to the nurses! That set the tone for the morning and she certainly wasn’t her usual, laid back self. After some discussion with our physio we decided a home visit is needed as I am struggling so much to carry out her full physio routine. For a while now whenever I do it (we do percussion) she will protest, wriggle, kick and scream to the point where I end up stressed and upset and give up. However, while my husband was home over the Christmas period, he did her physio every day without any drama! How does that work?! I don’t know whether she knows that if she cries so hard I will give in and stop, who knows? I have asked Chris for tips, have watched him do it and there’s no difference! Hopefully we will reach a solution soon.


We spoke to the CF consultant next who was just so happy with her. He commented several times on how strong and sturdy she looked! She has, indeed, come such a long way. We mentioned we were going on holiday next month and I wondered whether we needed to take back up medication for her on top of her daily meds just in case she gets sick. He explained that she was doing so well that there was no need. If, in the rare case she does, we can ring them and they can liaise with a Spanish pharmacy to dispense what we need. We also needed a letter from our CF doctor to take with us explaining the need for all the medication we will be taking, just in case it is questioned. Just as a side note we got a great deal on our holiday insurance from a company called Insure With. The lady I spoke to knew a lot about CF and the cost for the week was only £31 – good to know!

 

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Our final discussion at clinic was with Harriet’s dietician. Again, she hadn’t seen her for a while and couldn’t believe how much she has grown! We discussed Harriet’s love of all things sweet and how finally I think she might be over this phase! She certainly would still choose a bowl of ice cream over roast dinner but at least now she’s giving the savoury a go! We really noticed over Christmas that she was starting to eat more again so I was so pleased that she had gained a significant amount this time around! In fact she was the only family member to really enjoy all of the festive food. I had tonsillitis in the week leading up to Christmas, Chris had it the week after and Nancy had a cold for the full two weeks. Typical. I think we all need a little bit of what Harriet is on!


Finally, we still have a bumshuffler on our hands! She stands up well with support now and will pull herself up and over the last few days has looked like she’s going to stand up on her own from sitting but who knows when she will actually walk! We had mentioned it to her physio at the last clinic and she said this morning that she had spoken to a paediatrician after who told her bumshufflers are late walkers so if anyone can testify to that let me know! I know that when she finally does get on her feet that I will be wishing she would be bum shuffling again though!

If you would like to find out more about Cystic Fibrosis and ways you could help please click here.

Why I’d love to give up blogging…

Happy New Year to all! I thought I would start this year like many others by setting some goals and just reminding everyone (and myself!) why on earth I do this every week.

People start blogging for many reasons but for me the main one is obviously to raise awareness and funds for Cystic Fibrosis. All of my reasons for blogging are here in last year’s post; a good reminder to me too! Sadly there will be someone in the world at this very minute doing exactly what I did just days after our daughter’s birth. Googling CF like a crazy person, trying to find something, anything that would show me our lovely family life wasn’t over. To know that people find my website and see how we are still very much a happy, normal (ish!) family makes it all worthwhile.


Anyway, without anymore rambling I will start with probably the weirdest and unbloggerish goal ever….

TO GIVE UP BLOGGING!

I would love nothing more and I am sure loads of people would also agree. People who get sick of me clogging up their social media timelines with blog posts, research news and generally all things CF. To give up blogging would mean that a cure had been found so until that day comes, unfortunately I won’t give up. Sorry people! When I started this I said I would stick to one post per week, same day, same time and I have! 2PM every Sunday a new post goes live. Yes, they’re not all about CF but always for CF.


TO CONTINUE TO RAISE FUNDS AND AWARENESS

Self-explanatory really. My family are all so supportive and we often have different ways you can help our cause as it is hard to continually ask people for money. From stamp collecting to clearing out your old clothes, there are so many little things that all help.

TO GET MORE PEOPLE TO SIGN THE ORGAN DONOR REGISTER

This was not something I set out to do in the beginning as I cannot contemplate my baby ever having to have a double lung transplant. However, as time has gone on and I have gotten stronger I have been able to read the incredible stories of those lives saved by the gift of donation. Hopefully the UK will eventually have an ‘opt out’ policy but until then if you haven’t signed up click here please!

TO CAMPAIGN FOR PRECISION MEDICINES

As previously mentioned in this blog post, I am fully expecting the UK to reject Orkambi this year for CF patients. The cost is simply way too high at the moment for the NHS. Shameful that the company making the drug can charge such a price but as it is the first of its kind they can and they will until some competition comes onto the market. There are many who need this drug now, and time is running out so something has to be done. What though, I’m not sure! Answers on a postcard please or just a comment below!

If you would like to read more about Cystic Fibrosis and ways in which you could help click here.