Monday 30 June 2014

More than a year on and doing well

This blog is now more than one year old! (Which of course means that so is Sammy - Happy Birthday, Sammy!)

Apologies for not having updated this in a while, but you will be pleased to know it is because everything has been going pretty well recently. Sammy is now 14 months old, running around, exploring, learning and bringing us much joy every day.

On Friday we had a clinic visit and everyone was very pleased with Sammy's progress. It was a very long clinic which began with a chest x-ray (for which Sammy sat beautifully) and then visits from the Play Specialist, the Physiotherapist, the trainee Nurse, the Dietitian, the Nurse Specialist, the new Nurse Specialist, the Consultant, the visiting Fellow and the Psychologist. Sammy was quite happy to have so many different people fussing over him and telling him how cute he is.

In August we will be having Sammy's first Annual Review where the team will do a full MOT on Sammy and check an a lot more things than they do routinely. Part of this means that this visit they had to take blood for testing and he did wonderfully. He didn't even make any fuss when the needle went in but I noticed he was watching the whole thing with a look of slight confusion and puzzlement. It didn't seem to bother him at all though and he gave the phlebotomist a very friendly wave when he was finished.

It is quite an exciting time in the world of CF at the moment. This week a drugs company called Vertex published the results of a clinical trial that was testing the effectiveness of a combination drug therapy on people with CF. The results were pretty encouraging and showed a significant reduction in the amount of infections people were getting. This is good because every infection can lead to irreversible lung damage. Unfortunately for Sammy the drug doesn't treat his particular genetic mutation, but it is a big step forwards nonetheless and we are hopeful that something for Sammy will be coming along soon. Until then we just have to keep Sammy as fit as possible so that he can fully benefit from whatever treatments come.

You can read more about the drug trail results at the CF Trust's website here:
http://cysticfibrosis.org.uk/news/latest-news/promising-results-for-combination-therapy-for-cystic-fibrosis