Our CF Story so far….

Joseph is our lovely, lively, cheeky son who just so happens to have Cystic Fibrosis.

joe wedding

Joe was born 9lbs 9 ounces 15 days over due by induction. After a very easy pregnancy and a relatively easy birth there was no indication that Joe was anything but a happy healthy baby boy.

Josephs first day

He was perfect. We got him home and soon started to learn all there was to know about each other.

We first realised something wasn’t quite right when he wasn’t gaining weight as well as we’d have hoped and that he struggled with feeding- he wanted feeding constantly but would also vomit a lot. We expressed concerns with the midwife but she encouraged us to keep going as we were and so I thought nothing of it..

 

little Joe

We had the routine heel prick test during this time. A little while later I had an unexpected knock on the door. It was the health visitor with another lady in tow who I had never met. They came in and sat down and the new lady produced leaflets from her bag and started saying things like “have you ever heard of cystic fibrosis.”

Joe Baby black and white

She explained that Joe had “abnormal blood results” and asked if  I had anyone who could go to the hospital with me.”

Feeling numb and fuzzy and outside of myself all at the same time I began to panic, luckily Robin came home for lunch about ten minutes after they arrived so we could process this news together.

It’s possible your son may have cystic fibrosis. You need to take him to hospital for a sweat test tomorrow and speak to a consultant. We can’t confirm that he does have the condition, you need to get him tested first.” And the other thing they said was “don’t look it up on the internet. Wait until you have spoken to the doctors.” Alarm bells rang in my head and all I wanted to do was research research research!

We clung on to the idea that it wasn’t a confirmed diagnosis and that it must be a mistake! Not that we even really knew what Cystic Fibrosis was.

We needed someone to come with us to help process the information we were going to receive. The Health visitor was adamant we took someone with us. And who better than my mom. She didn’t hesitate and travel ed the one and a half hour journey up to us to offer her support.

Tigger Joe

So off we went to the hospital to see the consultant. We were taken into a room where there were three health professionals and I held my little baby on my lap. This is when they told us “your son does have cystic fibrosis we are very certain of this. The sweat test is just confirming what we already know, I’m very sorry” I could feel myself looking down at the room from a high up place. I could see my mom with tears in her eyes, my husband with a thousand questions on his lips and me holding my perfect baby oblivious to it all. I couldn’t hear what they were saying after that. I held my son down while they did the sweat test and watched him struggle and cry. I fed him his bottle and all the time I was just numb.

Now I know why the health visitor was so adamant we take someone with us to help. I couldn’t process this information. We were given a prescription for us to pick up and start using straight away for antibiotics. It wasn’t until I got into the chemist in the hospital that it hit me. My perfect Joe has a life shortening disability and there’s nothing I could do about it. There is no cure. I began to sob.

My mom took me out of the room and we went and sat on a bench in the cool air. I couldn’t stop crying. It was so unfair! Why had this happened to him? He didn’t deserve this! They must have made some kind of mistake! My mom held me and soothed me. We went and sat in the car. And we went home.

little Joe

So, our Joe has cystic Fibrosis.

So far he has had lots of courses of antibiotics, tons of medication and one two week stint in hospital on IV antibiotics.

There have been ups and downs and not exactly where you would expect them. Joe has been lucky so far in that he has only had to be admitted to hospital for IV’s once and has remained relatively well in terms of his lungs. Many of the problems we have faced have been due to his pancreas not functioning, reflux and food refusal resulting in Joseph being unable to maintain a good weight and us as a family needing to seek psychological support.

Despite our initial fears Joe is still our perfect boy. He’s now at school and is bright, happy and loving life just like all of his little friends. CF is in no means easy, it’s scary and life changing, but Joe is all the more amazing for the way he copes with it.

Joseph has CF, but he doesn’t let Cystic Fibrosis Define him.

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If you would like to find out more about what CF is and to donate to the CF Trust please follow THIS link.

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13 thoughts on “Our CF Story so far….”

  1. Oh Rachel what a sad beginning to your little mans life. Our cf soldiers are so brave and put up with so much. It’s only other cf mommies and daddies know Jst how much we all go through. I’m glad robin hasnt needed too many ivS in hospital long may it continue. God bless from another cf mommy xx

    1. Thank you very much for your comments and for taking the time to read my blog, I have started following you and have to say you seem to be an incredibly strong woman and your blog is a beautiful testament to your lovely daughter Orla, I am so sorry that you have had to go through such an incredibly difficult time, by sharing your story with others you are not only keeping the memory of Orla alive, but helping other parents who have had to endure the unspeakable too,it is very courageous. Kind thoughts from me, Rob and Joe x

  2. Pleased to have found you all here! My daughter was born in October last year and diagnosed at a week old. I also have a blog with our story which is emmakatecorr.blogspot.com looking forward to following your lovely family xx

    1. hi, thanks so much for checking out our blog, I have just signed up to yours on bloglovin, looking forward to reading more about your families story, congratulations on the birth of your beautiful daughter Harriet- looks like she has had quite an eventful life already! xx

  3. Thank you for sharing your story as openly and detailed as you have. I’m sure it is helping lots of folks out there that have been touched by CF. I am not a parent, but I married a CFer and reading your story gives me a whole new appreciation for my mother and father-in-law.

    1. Thank you so much that is a lovely thing to say, I’m glad our story so far has given you a different perspective I hope you and your husband and family are doing well, it’s great to know that people are reading.

  4. Hi Rach,
    I stumbled across your blog by accident when researching ‘cystic fibrosis children and nurseries’
    My son Leo just turned 1 on Monday 28th and has Cystic Fibrosis. So far I have pretty much just kept him at home with me and not really ventured out to many Mums and Tots groups or playgroups etc. we see a lot of my friends (some of whom have older children) and I have a HUGE family thatwe see all the time (I have a 2 and a 3 year old nephew) but I’m very aware we don’t socialise with any children the same age as Leo. I was thinking about starting him at nursery a few mornings a week and hence the search….. Your blog is lovely and really reflected all my feelings of having a child with CF. I mainly commented because we live about 10 mins away from ‘ Billy Bob’s’ ice cream parlour I’m Skipton and go there quite a bit! Glad to see you enjoyed it too.
    Joe looks like he’s doing fab, Leo has kept incredibly well this first year so we have high hopes for the future. Keep writing, I’m really enjoying reading it. As you’ve mentioned before in one of your posts… It’s only really other parents that can fully appreciate everything that goes into having a child with CF.
    All the best xxx
    Ps. Apologies for any spelling/grammar mistakes, Leo threw my phone the other the day and it’s smashed to smithereens- I can barely see the screen!

    1. Hi Jess,

      thanks so much for your lovely thoughtful comments! No spelling mistakes as far as I can see (can’t say the same about my reply though!) I’m so glad that our blog has been of use! You and Leo seem to be in a similar predicament to us- what with no other siblings or young children to play with regularly. I too kept Joe away from toddler groups really before the age of 18 months as I was worried about the affect it could have on his health, and I found a few of the groups to be too crowded and unhygienic! It is a really difficult decision to make and a very personal one for you and your family so don’t worry if you have to take a while to decide whether nursery is for you or not! We waited until Joe was two partly because he got 15 free hours, partly because we were scared and but we took the plunge as I was beginning to see him crave the company of other kids- plus it is great for YOU to get some time to yourself- looking after a child full time is hard enough without the added stress of CF! But it’s not right for everyone- remember you know what’s best for your child, go on your gut instinct! Joe loves nursery so far, the only problem we’ve had is that he won’t eat the meals there. He’s really benefited from the company of other toddlers, plus interacting with adults he’s not sure of has boosted his confidence with other adults particularly at hospital visits which is a massive plus! And touch wood his health hasn’t been impacted so far!
      I’m so glad to hear that Leo is doing great, long may it continue! Billy Bob’s is awesome, you guys are lucky to live nearby, Skipton seems to be a lovely area, we are based in the ribble valley in Lancashire so not too far away!
      And again thanks so much for reading and if you ever want a chat about anything feel free to contact me on here or via email ecstaticmonkey2000@yahoo.co.uk
      xxxxxx

  5. Hi Rach,

    Thank you for sharing your story. I totally feel for you. My little boy was born in 2013 and just like yours was hungry all the time, I thought it was normal! and was actually breastfeeding as well. So when I got the diagnosis I was devastated but sort of relieved, as I knew there was something wrong. I am glad your little one is doing well, ours is doing well as well. My hope is that this is a very different world from the one 20 years ago, and technology and medicine is advancing all the time. Who knows? Maybe ins 25 years’ time, CF is history 🙂 Keep writing. I will keep reading.

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