Chasing Butterflies Daily

One of the most common traits of achondroplasia, apart from the distinctive shorter length of the long limbs and consequently shorter height, is joint hypermobility . Joint hypermobility (also referred to as benign joint hypermobility) means that your joints are looser and more flexible than the average person's. Many may know the term "double jointed" which refers to the same thing.  Joint hypermobility is not exclusive to achondroplastics, I for example have it - most kids have it to a certain degree but outgrow it. Kids with achondroplasia tend to be many times more supple than an average height child is  though. The photo above is from last summer so our son is 18 months old or so, he can still sit like that with ease (he often draws on the soles of his feet by pulling his leg up like this) and he will continue to be able to do that for a long time to come. He can do the splits with ease and he uses his extreme flexibility to his advantage a l...

Very brief audiology appointment this morning as one of his hearing aids has been buzzing a bit. I thought it might be the tubes needing changed or possibly the moulds as they have started to not always sit great. Tubes got changed in any case and we have an appointment in 4 weeks to do a full hearing test and recalibrate his hearing aids for the first time since he got them in March (we'll also cast new moulds just to make sure they sit right as it may be a while till we get seen again).  I had a call from an ENT surgeon (ear/nose/throat) last week as well. His most recent sleep study had been much better than the one we did last January which had been very concerning, but he was also super sick at the time. Problem is he just seems to have a permanent cold, sometimes it's light other time bad - I mean we're grateful we've avoided worse infections so far this year but it's still exhausting for him. Anyway the latest sleep study still shows some abnormal...

Sweden didn't actively participate in either world war so Armistice day, when we reflect on the end of WW1, isn't a day that it marked in the annual calendar like it is in large parts of the world. I spent my whole life abroad & going to international schools however, so my education has been very imprinted with studies on both world wars. In particular during my years in Egypt & Belgium (the latter was filled with visits to battle grounds, graveyards & concentration camps both in Belgium & neighbouring #France).  My most memorable Armistice day I will have been a tween. We lived in Cairo & travelled out to one of the military grave sights, can't remember but I think I went with the choir I was in. An eerily beautiful & peaceful place despite the reality of death being so evident with the endless rows of stones. The day is one that's stuck with me, not just because one of the other students fainted as we stood still for so long. It wa...