On Monday we took our 12 week old son to the Royal Brompton hospital for his bronchoscopy and pH test and were a very apprehensive. The doctor's had briefly mentioned it in past clinics but no-one had talked to us about it in detail. Even after receiving the letter confirming the date the staff still didn't elaborate on when he could be fed afterwards or tips to help in hospital and for parents it is a very anxious and worrying time taking your tiny baby into hospital. Once again the feeling that we are being not told certain information so as not to scare us , leaves us feeling more alone and more worried. I searched the Internet for any more information on how to deal with a baby going in for a bronchoscopy but found nothing except medical terms which was very frustrating so I wanted to detail what exactly happened and how to prepare: 7am feed 8am fasting only a small amount of water 10am came into hospital. There was a bed shortage so we were taken to the pl...
A beautiful sunny day spent wandering around the Blumenfeld Photography Exhibition at the Courtauld in Somerset House which I decided to go to after watching a fantastic BBC4 programme all about his life. You weren't allowed to take photos which was annoying but the exhibition is huge and there was hardly anyone there - highly recommend going. www.somersethouse.org.uk/visual-arts/blumenfeld-studio . Below are some of his most famous photographs as well as a few from walking around Temple area near Somerset House. I never knew this iconic photo was taken by Blumenfeld, it was the poster for the recent Grace Kelly dresses exhibition at the V&A This photo was a magazine cover and I was obviously the inspiration for Cath Kidston, whose dress (below) I was wearing on the day I went to see this exhibition! Private courtyard in the sun in Temple Near Temple station, an unused Underground Exit, there are unused underground stations all over London that h...
On Tuesday I travelled to Birmingham for the first time for the Cystic Fibrosis Conference. Run by the CF Trust, I attended the second day aimed at family and friends to learn more about CF and meet some people. (They did a live stream on Facebook if anyone wants to catch up) It was a really interesting morning and a mix of families, doctors, physios attended. Doctors talked about a wide variety of drugs on the market that are in the pipeline for 508D and other CF genotypes. The Doctors all sounded really positive about the research being done even if it does seem slow and there are set backs. You can ask your hospital for remote access instead of/ as well as Clinics. This appealed to me as I live over an hour away from hospital so being able to have an oxygen monitor and other technology might be beneficial. It would also be great to monitor Henry's levels in relation to pollution or pollen levels and see how badly his lungs are affected. But they did stress the imp...
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