I can’t believe Harriet is seven months already. The time really has passed so quickly despite everything that has happened.
Nancy had a heavy cold so it was inevitable that Harriet would pick it up too. In all honesty, Nancy has probably suffered the most. I wish I had a pound for every wail of ‘maaaaam I have a snotty nose!’ Harriet just had a cough which, at its peak, was awful. It was only one night but she literally coughed none stop, no break for hours. It was awful but she was on extra antibiotics which helped it to clear. I have to keep reminding myself that all babies will have approximately ten colds in their first year and not everything is related to Harriet having cystic fibrosis.
We have really got going with weaning now. I was reluctant to go too fast too soon after her surgery but I feel confident that she can try most things now. I dug out the old, slop splattered Annabel Karmel and set about batch cooking to fill the freezer as I used to with my older daughter. The only difference now is I added some butter into vegetable purees for extra calories and some salt. After some reading I bought some Himalayan pink salt as it is said to have lots more health benefits than just normal table salt. If you’re going to have it you might as well get the most out of it you can! I purchased a large bag online but only a short while later both Aldi and Lidl started selling it at a fraction of the cost. Typical!
Our dietician did a home visit to discuss creon doses in relation to the fat content in food. Not going to lie, it all seems a little complicated right now but as with everything along this journey, I know it will become second nature at some point. Harriet now weighs sixteen pounds and ten ounces, and looking through Nancy’s baby book she weighed seventeen pounds at this stage so all things considered I am over the moon with that!
This month there has been some exciting new developments in the cystic fibrosis field. First up is a drug called Orkambi which is specifically for Harriet’s mutation of DdF508. I have been reading about this for a long time but to see it hit media spots like the BBC just made it seem all so official. The combination drug is the first to actually address the underlying cause of CF rather than just treating its symptoms so it is groundbreaking. I have spent way too much time watching patient testimonies at the conference in America who trialled this drug and it really is emotional. Results were said to be disappointing at first but at least it is something. It is a start. The way I see it is that these huge pharmaceutical companies are only going to keep on making improvements. The CF Trust are announcing the results of Gene Therapy next weekend. There is quite a buzz around this and I have signed up to watch it live online – sad I know! Maybe sometime soon I won’t be Googling ‘cure for cystic fibrosis’ at 3am.
Development wise Harriet is almost sitting up unaided. She is getting stronger and stronger everyday and loves to sit propped up with cushions or people – see above! Sleep wise she still naps twice a day, morning and afternoon, then does another twelve hours at night – the dream! We bought her a walker which she loves – well, she is such a happy little thing that there’s not a lot she doesn’t like.
Fingers crossed for some warmer weather – a hot summer would be so beneficial for Harriet and hopefully she will have built up her immune system by next winter!