Back to Addenbrookes ..

Another 6 months have passed so I’m back at Addenbrooke’s Hospital today for my neuromuscular check up.

Height, weight and BP all ok as I check in for the clinic. I’ve grown a bit more – which is fabulous as not growing is a side effect of steroids. I’ve not put on weight – again a positive as steroids can make you gain weight. BP all fine too. Oh and I had to do a wee wee in a test tube – all fun and games with mummy!!

Next onto physiotherapy – North Star assessment all went well and although I am better in some skills my score remains the same as it’s hard to move up points. All my limbs were then measured for flexibility – great news that my hamstring stretches are working and these are more flexible than 3 months ago – another win! All other areas are just as flexible as they were 6 months ago – so lots of daily physio, night splints and heel cups do work!

Next my appointment with the neuromuscular consultant and mummy & daddy chatted about how I get on day to day; how steroids effect me; how my other medication is going; how I learn at school and finally possible drug trials I can look to go on. For now I’m just going to be part of a DNA study ….. so off to have my bloods taken!

We had to go all the way over to the other side of the hospital for bloods – but it’s worth it as they are so good at doing it, and I’m so brave, they get what they need first time. I got told all about how some of my blood will be going by courier to laboratories in London, which I found exciting! To be part of this study mummy and daddy chatted to me about what it means and I had to be a big boy and fill in my own consent form too!

Such a busy day for a 6 year old, but it’s over now and I’m back home, tired but content.




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