First Nebuliser

Following on from a bronchoscopy aged 20 months, Harriet came home from hospital with a new addition to her treatment regime, a nebuliser. Like with everything else, at first it looked terrifying and complicated and I was never going to be able to use it. Three months later I can safely say that I was, as usual with these things, worrying over nothing! D-Nase or Pulmozyme is an inhaled drug which thins the mucus in the lungs. At the time of its release it was seen as a major breakthrough treatment for cystic fibrosis patients so it can only be a good thing.


Generally people are a little older when they start it but because Harriet has been so plagued by virus after virus it was agreed she would start. There is some concern over whether children this young (Harriet is two) can inhale the full medication properly but I think, for the most part, she does now. Certainly in the beginning she didn’t. We had to start by just wafting it in front of her face then slowly built up to getting the mask right over her mouth. We did this gradually and it took approximately three or four days. At the time of her getting D-Nase she really loved bubbles and she would shout and ask for bubbles all the time. Because of this we decided to call the nebuliser her bubbles and four months later it has stuck!


We were told to do this treatment at least half an hour before her percussion physiotherapy so we decided to do it at tea time after she had eaten and was still in her high hair that way there was no escape! Four months down the line we still follow this routine unless we have evening plans and sometimes it suits better to do it before her morning physiotherapy session. We are not yet at the point where she will sit and hold the nebuliser herself. She has tried but won’t keep it still. It has to be held in a horizontal position so as not to spill the liquid contents. I know of a few little ones who, aged two, can do this so hopefully one day soon Harriet will too. Not that I mind doing it at all but she likes her independence and for a while anyway would see it as a novelty to administer it herself!


The cleaning process of the nebuliser is quite specific in that it all has to be washed immediately after use in warm soapy water. We are not able to touch the filter part so need to be very careful. The individual parts are then all laid out on kitchen roll to air dry over night. I know lots of CF parents do things their own way but we just do as our team have suggested. We also sterilise it in a steam steriliser which has been a godsend.


The vials of liquid come specially delivered to our house from Lloyds Healthcare which is great. We get a phonecall to arrange delivery when we are running low and a text message the day before with a time slot. We are so lucky as some people have to collect theirs from their hospital. Someone has to be in as the drugs need to go straight in the fridge too. The nebuliser we use is an E-Flow Rapid and takes two or three minutes to work, again we are so very lucky to have a really new machine as some parents have ones that take up to ten minutes to deliver the same drug. Certainly a challenge to get a two year old to sit with a mask over their face for ten minutes plus! It also comes with a mouthpiece but I really don’t think we are even close to Harriet being ready to use that. For now, she will happily have the mask and that is good enough for us.


In terms of its success, I can’t say she hasn’t caught anymore infections than normal but on the other hand I would hate to take it away and for her to be even more prone to infection. It is a very expensive drug and we are so grateful she is able to have it. If we had to buy the nebuliser (some CF parents have) it would cost approximately £600! The drugs themselves cost approximately £20 per day so not a cheap treatment at all. This really scares me as cystic fibrosis patients have to pay for prescriptions when they reach adulthood in the UK, a law decided when not many people with CF made it to adulthood. Another matter that needs to change.

Hopefuly this post will help some when they too are faced with another addition to an already complicated treatment regime, it’s really no big deal I promise!

Read how we became CF parents here.

To learn more about cystic fibrosis and ways in which you can help click here.

 

Harriet is Two!

I can’t believe that Harriet turned two last week, seems like she’s been here a lot longer as she really has packed a lot into two short years. She has had three major surgeries, a bronchoscopy and about a million viruses! Throughout all of this though she has remained a very happy and content little girl. In fact she was so content that she decided not to bother with walking until she was twenty-two months old. In typical Sod’s law fashion, a few days before she had to have bloods taken to test for all forms of muscular dystrophy she started to walk. Now, aged two she has just mastered jumping, much to her delight as she had been trying for a few weeks! Really good news for us now though as she can start on the trampoline which is great physiotherapy for her.


A few weeks ago Harriet had her second annual review. These appointments are in a normal CF clinic but take that little bit longer. A regular clinic appointment generally takes about an hour as we sit in our own rooms and staff come to us to prevent cross infection. After being weighed and measured we see a nurse, physiotherapist, dietician and a consultant but for annual review bloods have to be done and a chest X-ray. This time was the first time Harriet stood up for her x-ray and she was so good! In fact I couldn’t believe just how cheery she was all day with everyone who came to see her. She had been in a phase of being not so happy for members of the CF team to check her over so hopefully this is a thing of the past.


The whole review went really well. She had gained weight and height. Her blood results showed that her vitamin levels were really high so we have to drop another supplement which is fantastic. We are, however, picking up another antibiotic for the winter called Septrin which will hopefully prevent her picking up as many coughs and colds as she has done in the last year. Fingers crossed! She is also doing really well with her nebuliser that she started in June. She has her ‘bubbles’ once a day, usually early evening before her night time physio. We are so lucky that she is so compliant, for now anyway!


In terms of Harriet’s development she is really coming on a treat. She can now put words together to form sentences, not so great when she’s shouting ‘mammy juice NOW!’ She is enjoying one day a week at nursery, especially this last week as she got to take a birthday cake in and everyone knows just how much she loves her puddings. She is now trying so hard to run, she will count herself down then try to speed off but her little legs just can’t quite get there yet. She looks hilarious trying though.

For her birthday we are having a little party with family and friends. We are also taking her to see Frozen on Ice with her big sister and I can’t wait to see her little face. She is so very excitable, she squeals with joy just spotting a cat in the street so I’m guessing she’s going to be off the scale excited seeing Elsa and Anna.
Over the last two years we have been through so much as a family. There is a lot to learn still about cystic fibrosis but we will keep going, keep on raising as much money and awareness as possible while bringing up two beautiful girls. We will do everything we can to achieve a life unlimited for our our daughter and everyone else with CF.

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

Check out last years blog post from when Harriet was one here.

Never just a cold…

This is going to sound really awful but when my eldest daughter was smaller I would rarely bat eyelid if she had a cough, cold and snotty nose. As far as most parents are concerned it’s just par for the course when kids are building up their immunity. How totally and utterly rubbish to then fear the most common, pathetic of illnesses. To us they’re a chore, I just have no time for colds, so annoying. For someone with cystic fibrosis, however, a cold can be potentially very dangerous. Cough and colds can lead to hospital admissions for IV antibiotics and cause irreversible lung damage which we cannot have happen. We need to keep Harriet’s lungs in pristine condition.


Since Harriet was born I can honestly say she has caught every single cold and virus going and then some. Six weeks is the best run we have had in two years without having a cough which is a pretty depressing fact. Every time Harriet gets a cold or cough she has to go on extra antibiotics, more medicine twice a day on top of all of her other medicines. Since the start of the year Harriet has started to follow quite a regular pattern of illness which is both baffling and exhausting. Every two or three weeks for the past eight months Harriet will catch a virus of some sort. She will always start with a dry cough and anyone who knows me will have certainly heard about it! Once the dry cough starts it is incessant. For two or three days and nights we do not sleep, we sit up all night while she coughs without any respite. There are no gaps or breaks inbetween the coughs, it is literally NONE STOP.


I defy any loving parent to lie in bed all night and listen to their child going through this without going in to comfort them. I say comfort, in our case she sits in our bed and watches the iPad while I try to cuddle her! She doesn’t get distressed at all, unlike me, who has in the past taken her to hospital when this first started happening. It is clear that she cannot sleep for coughing so I am certainly not going to make her try. I have discussed, or rather moaned at great length about this to our CF Team but no one knows why this is happening. Our team are really only involved if Harriet gets a wet cough, those are the troublesome ones, so at first we thought she may have recurrent croup. After two or three days of the dreaded dry cough it always then turns wet. Again, sounds awful but as soon as it goes chesty it is so much more manageable. She will then barely cough and can actually sleep all night. We were given a blue inhaler to try with the dry cough but we have found it provides little, if no relief.  So puzzling, if anyone in the CF community has experience of this please get in touch!

We have to be thankful that throughout all of this Harriet has never been unwell with each virus. She is always full of life, happy and a joy to be around even when she’s not sleep for days- unlike me! Because we have followed this pattern for such a long time now, Harriet is going to have a winter antibiotic called septrin. She will take this daily throughout the winter to try and stave off any viruses. I have high hopes as I do not know how much longer we can keep up with these all nighters every few weeks! Fingers crossed for us it does the trick and breaks this awful cycle we are in.


If you’re reading this and have a cold maybe spare a thought for those with CF and be thankful that in a few days you will be back to full health. After seeing what my daughter has been through in her two short years and how she deals with it all so well I try to never moan or complain (much!) again. I read somewhere that one persons cold could be another persons hospital admission so please think of the vulnerable people around us and try to keep your germs to yourself! 

If you would like to learn more about cystic fibrosis and ways in which you could get involved please click here.

Harriet’s 21 month Update

The last few months post IV’s have been so good for Harriet. Following her stint in hospital for a bronchoscopy and subsequent IV antibiotics her health has been stable which is just what we want! She did come down with another cough six days after being discharged but that soon settled with a course of azithromycin. This medicine seemed to work the quickest of all she has ever tried. Looking back over the first half of 2016 I’m not entirely sure how we got through it! It has been a pig of a time. Harriet was getting sick every few weeks and we were in an awful cycle of coughing all night, sitting up all hours desperately trying to get some relief for her but couldn’t. Because of this at her last clinic appointment we were given an inhaler to use with her if needed. I knew that once I got something to try to help it wouldn’t happen again though and touch wood, so far I was right!


The last clinic went really well; chest clear, swabs clear and weight gained! We were so pleased. Harriet had lost a little weight the last time and I take it so personally, silly I know but I am sure every other mother would feel the same. I had gone back and forth deliberating with her eating. She happily eats sweets, puddings etc but we have always struggled with savoury. My sensible head said she shouldn’t really have pudding if she isn’t eating her main meal but after the weight drop I let this go and decided to let her have whatever she would eat. Thankfully this hasn’t done any harm as she has gained weight and lately has surprised us all by trying so many different savoury foods! Hopefully it was just an awkward phase and she will now continue to go from strength to strength with her eating.


Another big change to our routine was the introduction of a nebuliser. While in hospital, Harriet started on D-Nase twice per day initially then dropped to once. Obviously it was new and scary for her at first but gradually she has accepted it. We tend to do it after she has had her evening meal so she is still in her high chair – no escape route! She loves bubbles so that’s what we called it at first and now it has just stuck. She will even ask for her bubbles once she’s finished eating! Whether her improvement in health is down to starting D-Nase, who knows but I for one am glad she is on it now!


In terms of Harriet’s development her speech is coming on in leaps and bounds. She can count to ten, enjoys making animal noises correctly and enjoys to sing and dance. She went to watch her older sister in a dance show and loved every single second! She stood up in her chair dancing the whole time! She is, however, still not walking. She can do it and we are making progress every day but it is very slow. She will walk when she feels like it and we have been told by health professionals that now it is purely a choice issue. She chooses to shuffle on her bottom as she knows she can get to where she wants to be faster than walking. Anyone who sees me on a regular basis knows just how frustrating this is for us as a family. I have almost given up taking her to the park as she refuses to walk and thinks she can scoot along the ground. Groan. So many tantrums have taken place after she won’t walk so gets put back in her pushchair to watch her sister run around playing.


Harriet will be two in October and starts going to nursery in September as I am going back to work. She will only be there one day a week but naturally I am very nervous about handing over her care to others. I will do her medicines, nebuliser and physio treatments at home so while at nursery the only medication to do will be her creon (enzymes to help her digest food with a fat content.) Harriet’s nurse will also come in to speak to staff before she starts so I know she will be fine and no doubt enjoy herself but it is naturally going to be difficult for me at first. She has her first visit this week so wish us luck!

If you would like to learn more about cystic fibrosis and ways in which you could help click here.

Fundraising Update

Just a brief update from me this week as I am currently drowning in exam papers but needs must! We have a few things coming up and ongoing campaigns that everyone could get involved in. Firstly, if anyone is looking for something to do today please head down to Harton Quays Craft Market. It is located just along from The Customs House in South Shields with lots of stalls selling crafts, handmade gifts and tasty treats. As ever, my lovely auntie will be there selling her wonderful artwork for The Stuart Gordon Fund. The weather forecast is good so definitely worth a trip, we will be there too supporting.


We continue to collect stamps for The Stuart Gordon Fund too. Please keep yours, ask family and friends, workplaces etc. Every little helps. We have recently received large donations from some of my neighbours and the chemist we use for all of Harriet’s medication so thank you to all involved.


We have a few people signed up for The Great North Run this year so any sponsorship would be fantastic. Monies collected here will go to The CF Trust. My husband, sister-in-law and Harriet’s godfather have set up a page together to save the same people sponsoring each individual and we also have a good friend of ours running. Please click the links below, takes very little effort, unlike running a half marathon.


Finally, July 1st is ‘wear yellow’ day in the UK to raise money and awareness for The Cystic Fibrosis Trust. If you haven’t already please text YELLOW to 70500 and donate £5. The only way we are going to beat this disease is to keep going. To keep raising awareness, keep raising funds. Harriet managed six days out of hospital before she got sick again. This is not good enough. Please help her to live a long and full life unlimited by cystic fibrosis.


To sponsor The GNR Team click here.

Help Adam reach his target for the GNR and click here.

To read more about cystic fibrosis and more ways to get involved click here.

First Admission for IV’s

When I think of a two week course of intravenous antibiotics I imagine being hooked up to machines for hours on end and a person looking very sick indeed. How wrong was I?! While Harriet was still under general anaesthetic the doctor placed a long line in her arm into which her medication would go. I was shocked to find out that it was one syringe, just like her oral meds done at home, but connected up to her line and pushed in. Took all of a minute maybe! So we were in there to have that done three times a day and around those times we could come and go as we pleased.


After a few rough nights following the bronchoscopy, things settled down and we got into the routine on being on the ward. I have nothing but praise for the staff, they really do everything they can for you. Harriet’s morning and evening medicines were all brought in to us, the physio would come to do her percussion and she had access to every toy imaginable. I had made the mistake of going and buying books, new crayons and activities for her beforehand and was blown away by the amount of resources on the ward. All the toys were so lovely and clean too which made the neurotic in me happy!


When the weather was nice we went out into town, even getting a free pizza one evening. Chris said he is going to bandage Harriet up in public more often! We did alternate nights at the hospital where inevitably Harriet was an angel, sleeping through everything for Dad and then not for me. So unfair! In all of this our older daughter, who is four, was such a superstar. She just goes with the flow, went about her daily routines going to nursery then not complaining once when she had to go backwards and forwards on the metro to the hospital. She is such an amazing big sister to Harriet.


All in all it certainly wasn’t as bad as I had expected. The beds for parents aren’t great but at least we had our own room with our own bathroom and a nice view of one of the old university buildings. Harriet got to try some different foods while in there and managed to gain some of the weight she had lost previously. She did really miss her sister though and one evening after she had left for home with dad, Harriet bumshuffled the length of the corridor to the exit and stood for ages calling her name. Even when we went into the city centre and passed the metro station she would point at it and cry saying ‘toot toot’ as if she wanted to go home!


Finally, when her cough stopped we were able to come home. On top of all of her usual medication we now have a nebuliser to use once per day to help thin her mucus. We also have a months worth of extra antibiotics to run alongside her prophylactic dose so fingers crossed it does the trick. The bug she keeps growling, haemophilus, had gone on her most recent two cough swabs so hopefully it has been eradicated. We have to take heart in the fact that despite such an awful run of luck there was nothing sinister to report from her bronchoscopy and that gives the clearest picture of what’s going on in her lungs. We are all so happy to have her home and long may it continue.


If you would like to learn more about cystic fibrosis and ways in which you could help click here.

First Bronchoscopy

Preparing yourself and more importantly, preparing your child for a hospitalisation is never going to be easy. At nineteen months old, Harriet had to have her first bronchoscopy. Sadly, we are no strangers to theatre as she was born with meconium ileus and had to have surgery at only five days old, awful. Handing her over again at six months old for a stoma reversal was awful and this time was truly awful too. Never gets any easier. If you have read my previous post, preparing for a bronchoscopy, you know the reasons why we have got to this point; persistant coughing plus growing haemophilus, twice!


Alarms were set early as Harriet wasn’t allowed anything to eat past seven am. We decided to fill her up as much as possible before then and she was only allowed water after that. Thankfully she’s not too fussy and we find when she does have a bug or cough her appetite dwindles anyway. Big sister was happily packed off to Grandma’s for a day of fun and we headed up to hospital. The wait was long, we had hoped she was going to be first at 1.30pm but it was around 3.30pm when she was called. We had managed to keep her going and entertained all day so by this point she was desperate for a nap and fell asleep in my arms five minutes before walking over to theatre. I just prayed she didn’t wake up until it was all over! Only one parent was allowed into the room where she would be put to sleep so I carried her in, still snoozing! The anaesthetist held the gas mask near her face and she stayed asleep, it could not have gone any better. I still cried when they told me to kiss her goodbye and had to hand her over and walk away. Any parent who has had to do this will know just how horrible it is.


Luckily our room on the ward was ready so we could go and unpack for our potential two week stay. Theatre staff would ring when Harriet was coming round and we would be escorted back down to see her. I overheard a phonecall which seemed to be about her but the nurse looking after us wasn’t there so we would have to wait. The poor staff in theatre couldn’t wait though, after a few minutes I heard a commotion outside the room and there she was being wheeled up! She had kicked up such a fuss on waking that they brought her straight to us! She’s so funny!

For a while she seemed fine, a little pale maybe but happy to watch Frozen for the billionth time. Our consultant came round to tell us that they hadn’t found anything suspect in her lungs which is just the best news. She had a little area of extra secretions which they sucked out but other than that all good. We were told she could spike a temperature and possibly vomit that night but she was doing great. The plan was to do ten days of IV antibiotics and start DNase, a nebulised solution which thins mucus, twice per day.


After a while Harriet became increasingly clingy and just lay on me cuddling in. She gave me quite the shock when she vomitted all over me! I’m not used to it as she’s never been a sickly child. Thankfully it was just the once and she settled again. In terms of coughing she still seemed quite bad. A bronchoscopy can stir things up and this was certainly the case on day two. At around 6pm the following day she started coughing NONE STOP. She did not stop until 6am! We sat up all night watching the iPad, watching Frozen, watching birds on the university roof opposite, we saw it all. After this my husband and I did alternate nights! Everything settled after that night though so I think it was all down to the procedure.


Watching your child go through this is never going to be easy but it is the best way to find out exactly what is going on. I do hope that we don’t have to have another one for a long time, if ever. The only way to try and stop this from happening again is to keep raising awareness and funds.

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

Preparing for a Bronchoscopy

Gutted to even write that title but on Thursday this week Harriet will have her first bronchoscopy. I feel like we have narrowly avoided this procedure and hospital admissions so many times, in a way I should be glad she’s got to nineteen months without any huge interventions. The reason behind the bronchoscopy is pretty much due to back to back viruses. Harriet seems to catch one every few weeks. She has had a lingering cough that has peaked and troughed for months now and has never fully gone away, until two weeks ago. She had ONE week of being well and completely cough free and we really felt that this was it and she had turned a corner. Typically her older sister developed her first cough and cold in months and you can guess the rest. I could have cried when I went to get Harriet out of her cot one morning to find her absolutely loaded with cold.


A week on from this it is showing no signs of abating either. The brochoscopy was going to be cancelled if she stayed well which now is not going to happen. Due to the scheduled procedure she cannot be on any extra antibiotics so she is just riding this cough and cold out until Thursday. The harsh reality of having a baby with cystic fibrosis is kicking in right now. Reading through the paperwork for the procedure brought back all those awful memories of when she was a newborn and having to hand her over in the theatre waiting room (Harriet was born with meconium ileus.) Not having a clue what was going on, why my precious new baby was having to have a major operation. This time, as she is a little older, one of us will be able to stay with her until she is asleep. Who that will be, me or my husband, I don’t know. I did feel a little ashamed of myself when she had operations as a baby for sitting out of the room as I couldn’t handle watching what they were doing to her. I had a moment where I gave myself a firm talking to and vowed would never be such a wimp again and would be by her side, holding her hand through all the horrible things she has to go through.


Our day will start early as Harriet isn’t allowed anything to eat past seven am so I’m going to load her up as much as possible! Thankfully she is a pretty chilled character and I’m not expecting this side of things to cause any problems. She is only allowed water after that up until eleven am then nothing. We have to take her to hospital for midday to prepare for the procedure at around one thirty. The list runs in age order, youngest to oldest so she should be first, fingers crossed. The bronchoscopy itself only takes ten minutes. A tube will be inserted through her nose to allow the doctors from our CF team to look at the back of her throat and her lungs. Depending on what they find they will decide then and there whether she needs to be admitted to hospital for seven, ten or fourteen days for a course of intravenous antibiotics. We are to prepare for at least an overnight stay and pack our bags.


Naturally we are hoping for the best possible outcome in that they find nothing sinister and are able to give her a wash out and send her home. Despite that being the preferred outcome it wouldn’t give us any answers as to why she has picked up every single virus going and has coughed for so much of this year already. So we find ourselves caught between a rock and a hard place. Ultimately Harriet’s health is top priority so this has to be done to keep her lungs in the best shape possible no matter how difficult it may be. Not only will the procedure be distressing for her but the impact it has on our family life won’t be nice either. Harriet adores her older sister and cries for her whenever they are apart, even if they’re just in different rooms at home! To separate them for potentially two weeks is just devastating. Of course they will be allowed to visit but it’s just not the same is it?


I am trying to find positives, I really am. It is for the best but the negatives are overtaking at the minute. Watching your baby be starved, undergo a general anaesthetic then potentially have a line fitted in her arm for IV access for up to two weeks is never going to be easy to deal with. To be away from home, from family and be confined to a small room in hospital, again, not easy. The fact that everything is up in the air at the minute is hard to bear too. I like to be organised and make plans. CF seems to be good at messing with them. We have, however, planned all of our days leading up to Thursday with fun stuff to keep us busy! We will certainly make the most of these last few days as a family altogether.


Depending on what happens I am unsure how much or how little I will be able to update so please keep Harriet in your thoughts and prayers this week. Wish us luck!

To read more about cystic fibrosis and ways in which you could help click here.

Harriet’s Eighteen Month Update

The last month didn’t get off to the best start when I went all Edward Scissorhands on our little Harriet. I can’t even explain how or why, she was just there, sat still with her fringe right in her eyes so one little snip turned into something awful! Her fringe was going down into a point so logic told me I could just cut the pointed bit off…turns out I was very wrong! One snip lead to more, then more, the end result  being of a set of pictures which I am sure will come back to embarrass her at some point in her life! Poor bairn, thank goodness for hair accessories!


Health wise we were still battling with a lingering cough. One day it seemed better then the next day it was back? I really don’t understand! Again we reached a point where things escalated and we had three nights of constant coughing and no sleep. I gave up trying and we sat up watching Frozen most nights over and over just to keep her comfortable and happy. I can’t imagine what it must be like to have only a minute or so between coughs and coughing so hard you can’t sleep. So upsetting. Harriet had been on two extra courses of antibiotics so now after this latest escalation she started on Azithromycin. A few days into this I received a call from one of the nurses to tell me Harriet had grown something on her latest cough swab. Before the nurse had the chance to even speak I was in full on panic mode, expecting her to say Pseudomonas but thankfully it wasn’t! She has grown haemophilus influenzae again so needed to change antibiotics to the one that is known to kill this particular bug, fingers crossed it has!


Because Harriet’s cough had lingered for so long I was asked to take her up to the hospital to be seen by one of the doctors outside of clinic. On examination they weren’t too worried about her but her weight had dropped by 400g. I know that doesn’t sound a lot but it really gets to me. I guess I see it as a bit of a fail on my part, not trying to fatten her up enough! The upshot of the appointment was that if her cough didn’t completely clear soon then further investigations would be needed; a bronchoscopy. Persistent cough aside, she is and always remains in good spirits. She copes with everything so much better than I do!


On a lighter note, Harriet has enjoyed her usual fun packed social life! She enjoyed her cousins second birthday party, Grandad’s surprise 60th, Nancy’s dancing awards night and the fundraiser at our house just to name a few! Life still continues despite bloody CF and we won’t let it stop her doing what she wants to! At the end of the month we headed off to Scarborough for a long weekend on the coast. I love getting her to the seaside (salty air is meant to be good for her) and we are so lucky to live right next to some of the best beaches in the UK. On arrival, we couldn’t have been any closer as our caravan was perched on the cliffs! Not going to lie, the first night was a killer, it was so cold. Naturally, I then began to worry about Harriet, how imperative it was for her to get well soon and this could set us back. Thankfully the sun finally decided to come out and we ended up having a fantastic time.


Finally, she is still not walking! She can stand unaided, walk along the furniture, manoeuvre herself well on any ride on and climb a full flight of stairs! Basically she will do anything but walk. She has definitely made progress though as she will walk with someone holding her hand now, whereas before she would just scream at us as if it say I am not doing that! It’s now got to the point where we all can’t wait for her to just do it but from her point of view she can get about at some speed on her bottom so why bother?!

Next month I want to say that Harriet is cough free, didn’t have to have a bronchoscopy and is walking. We live always in hope!

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

Five Positives for Newborns with Cystic Fibrosis

At the time of your babies diagnosis you may think there are no postives about having a child with cystic fibrosis, granted there aren’t many but it really isn’t all as doom and gloom as Google will make out. Trust me, I went there, despite being told not to! One of the main reasons I started this blog was to show that happy family life does go on despite thinking your whole world has collapsed initially. I take great comfort in the following and hope it helps someone out there too.

1. Early diagnosis: Most babies are now diagnosed via the routine heel prick test within the first few weeks of life. However, this wasn’t the case for us. Our daughter was born with meconium ileus, one of the first signs of CF, this is much rarer. Early diagnosis means starting treatments earlier and therefore, preventing any damage to our little ones lungs. Screening through the heel prick test only started in 2007 so babies born before then often went a lot longer without CF being identified. Hopefully starting treatments so early will raise life expectancy.

2. Improved Treatments: I read the other day that cystic fibrosis was only discovered in the 1930’s! One of the first things to be developed was pancreatic enzymes to help sufferers digest their food properly, known today as Creon which is taken with every meal that has fat in it. Without this, patients would be severely malnourished and poorly. Advancing forms of physiotherapy to help with airway clearance mean patients are able to loosen the thick mucus in their lungs. Percussion, bubble pep, acapella and vests have all been introduced and show great benefits alongside regular exercise which is so very important too. The introduction of DNase in the late nineties was heralded as a big breakthrough as it thins and loosens the thick mucus via a nebuliser.

3. Increased life expectancy: Cystic Fibrosis was once seen as a childhood disease. So much so that adults with CF pay for their prescriptions as nobody used to survive. Life expectancy has risen so much over the last few years and can only continue to follow this trend.

4. The Cystic Fibrosis Trust: Parents of a newly diagnosed child are often pointed in the direction of the U.K.’s main charity. They are so much more than just a fundraising organisation. The help and support available to parents and to those with CF is immeasurable. They are at the forefront of pioneering technology and work so hard to fight for a life unlimited by CF for all.

5. The Future: For the first time ever, drugs are now on the market that tackle the root cause of the disease. The company who manufacture these drugs, Vertex, are now working on even better versions of these pills. Many other pharmaceutical companies are also following suit and have similar, potentially better drugs coming than the current market leader. Gene therapy is really progressing at the moment too with The GTC in the UK now proving that it can be done but there is still important work to do to perfect it.

I don’t think a day goes by when I don’t read about another company working on a potentially game changing medicine or treatment or, dare I say it, cure! I feel so lucky that my daughter has been born at this time of such great medical advancement and feel very positive about her future.