The Reason I Blog

There’s not a day that goes by without me wishing that I wasn’t doing this. Wishing that I wasn’t on Facebook, wishing that I didn’t spend my spare minutes reading medical articles, and most of all wishing my baby didn’t have cystic fibrosis. But it is what it is and we have to deal with it in the best way we can as a family.


It took me about five or six months post-diagnosis to be able to talk about it and tell people without bursting into tears. Even now I’m trying my best not to cry writing this. I don’t like to reflect, I like to just keep going, keep her well and be positive for her future, our future together.


After Harriet was born my family started to do all kinds; fundraising like crazy for CF. I felt so guilty for so long that there I was, her mam, doing nothing to help. My husband, sister in law and friend all signed up to do The Great North Run. I enjoy fitness and exercise but distance running is just not my thing. Short attention span according to Chris haha! So this, the blog, is my Great North Run. Each week I share a little bit of our privacy in the hope that people will come back and read the most important posts. The ones where people can learn about cystic fibrosis, raise awareness and most importantly raise money to fund research into better treatments or a cure some day. I know there is only so many times you can ask people to give you money or sponsor you to do all sorts of crazy things so we try to mix it up and have lots of other ways to get involved!


Another hugely important reason I started this was to help others. When Harriet was first diagnosed and we were in hospital after her birth dealing with Meconium Ileus, I spent forever on Google looking for something like this. I thought our lives were over; I did not think family life would be the same again. I was wrong, so wrong, and I want to show that to parents of the newly diagnosed.

To get messages from parents currently facing the same situations we have been in, saying that my blog has given them hope and made them feel a little more positive about things means job done for me. Even if I’ve given comfort to one or two families in their darkest days post diagnosis I’m happy with that. So, that said, I will endeavour to keep going, to show that life goes on despite this cruel hand we have been dealt. We have an amazing, happy family life and will continue to do so.


If you are in or have faced similar circumstances please do not hesitate to get in touch via social media links above or comment below.

 

Harriet’s Eight Month Update

This last month has been a tough one. My husband was away for over four weeks, he only came home for a few hours for our quiz night, so I was exhausted by the end of it! Hats off to all single mothers out there; I have been in bed by 9pm most nights as my days are very much none stop!


Harriet caught another cold from her sister and I was devastated. She had only finished an extra course of antibiotics a week previous so I’d hoped it would come to nothing. It didn’t and she got worse. She was coughing a lot but it was her breathing that sounded the most concerning. It was so loud our nurse said she sounded like a train! After her visiting to check Harriet over she said she wanted her to be seen at the hospital which has never happened before. I was fully prepared for us to be admitted for a course of IV antibiotics which was unthinkable as this can be up to a two week stint. The thought of having to put her through this was too upsetting especially as she was fine and dandy in herself! I was also terrified at the prospect of leaving my three year old again without her mam.


Filled with dread we headed up to the hospital. Considering that Harriet had been coughing for pretty much the last month I thought it would be nothing short of a miracle if we escaped! When we saw our doctor I explained that Harriet’s older sister had also had a cough and cold for almost a month so he gave us the benefit of the doubt and let us go home with another two week course of oral antibiotics. Such a relief! Chris had been waiting by the phone with his bags packed in Wales ready to come home so it was great that he didn’t have to leave an important job.

While Harriet was there instead of the usual cough swab she had a suction tube out up her nose so her secretions could be tested. This is apparently a more accurate way to test for any bugs she could be growing. I forgot all about this and we busied ourselves for the charity quiz night we had coming up. On the day of our event our nurse telephoned to tell me Harriet had grown some bugs. I went into immediate panic mode. She calmed me down and explained that she would come to our home to talk me through what she had. Being an impatient kind of person, to which my husband will attest, I asked on a private CF parents group for any information on haemophilus influenza. Within seconds I knew it wasn’t one to worry too much about and that thankfully Harriet was already on the correct treatment so it wouldn’t cause her any harm. I feel so fortunate that we live in such a day and age where information is at our fingertips within seconds and these closed support groups are just fantastic. There is always someone ready to help who has been there and can put your mind at ease. The online CF community is truly invaluable.


Two weeks after this, fully recovered, Harriet had her routine check up at the CF clinic. Our team were really happy with her. She has had her prophylactic antibiotic increased as she is now bigger. Her creon has also been increased as our dietician feared she may still be malabsorbingĀ a little. But the best news was that she has made it onto the 50th centile for her weight! She weighed 17lb 6oz at clinic, hopefully more now, and has moved up through the growth charts. To think that she started on the 9th centile and stayed there for a long time! When she made it to the 25th our health visitor said that’s probably where she would stay so to get her up to the 50th is such great news for us. So because of this she is now on standard baby formula! She had been onĀ infatrini peptisorb for so long which is a high calorie, prescribed milk that I thought she would stick with it till she was fully weaned. Again, another fantastic achievement.


Despite illness this month, Harriet has continued to be ever smiley and cheerful. She is such a joy and we are very proud of her!