Chasing Butterflies Daily

Just a brief one as I'll blog properly about it after we meet ENT. Elis had his first hearing test since he got his hearing aids in March & his hearing hasn't changed in the slightest. Good that it's not worse but as he's been refusing his aids lately I was hoping it may have improved a little but it really hasn't while even the audiologist noticed his mouth breathing is more audible. Now that we've got a recent audiogram we can hopefully meet our ENT (ear/nose/throat) consultant soon & see what he thinks about Elis' tonsils & adenoids. I will hopefully get around to writing a little about how the hearing test was performed as it is quite interesting to watch so this post will hopefully be updated in the coming weeks. Having talked through the different options with the audiologists (we've been lucky to work with the same team throughout Elis' care the last 2+ years & I have a lot of trust in them as we've built a go...

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...

Halloween is fast becoming one of the biggest celebrations of the year worldwide. It's enjoyed by little 'uns as well as older and drunker humans as an excuse for revelries, especially of the night for the latter. For many of the rest of us it's the small bastion we hold on to before all the people who'd have Christmas all year round if they could, force us to live with Christmas through November (sorry if you're one of "those" people - I don't hate Christmas I just believe it belongs in December and any excessive celebration ahead of time just makes me enjoy it less).  As a Swede I didn't really grow up with Halloween being much of a thing. We dress up as witches for Easter but that's for another post and for us the 1st of November is a bigger tradition. It is known as "Allhelgona afton" - All Saint's eve - and is a day for remembering our lost loved ones. Lights are lit everywhere in our deep Nordic autumn darkness, ...

Some Halloween spirit for you while also covering some dwarfism awareness. Husband got the kids some Halloween costumes yesterday - every year we discuss ideas to so as a family and then inevitably we end up buying from the supermarket. One year we'll get round to making some fun themed costumes but not this one! He'd brought back a skeleton baby grow for our son. It's a size 12-18m which is pretty much ideal when it comes to torso length (despite being 2.5 years old his disproportionate form of dwarfism - achondroplasia - means his limbs grow slower than his average height peers which means clothes take extra planning) and it is only a little long in the sleeve. The trousers are a no go though as the bottoms he has that fit are either 6-9 or 9-12 months.  Worth noting that just like average height kids all grow differently so do kids with achondroplasia, their height and limb lengths can vary greatly so what fits Elis just now won't necessarily work for ano...

This is a blog post I've written for the DSAuk newsletter, only thing added here are my photos and the video clip. Head to their website for more information on the charity HERE . This year has of course seen many events and plans changed. I am sure we're all tired of reading stories that start like this and yet by now it's slowly becoming normality to us all. Sadly for DSA members across the four nations it has meant that much needed get togethers haven't happened. In Scotland we rely heavily on the work that Hailey does through the DSA as it is for many the main way we can meet others with dwarfism. It means it's important not just for the physical and mental benefits of allowing everyone a chance to do sports. It is so much more than that as there are many purely social events and a lot of support offered and knowledge shared between members that we simply don't get elsewhere. We are fortunate that this is the case but it's also made all the ca...

Home made play dough is ridiculously easy to make and takes very few ingredients. Generally all things you have in your cupboards normally. Now most of the recipes I can find involve cream of tartar which we never have, BUT we always have lemon juice (I'm obsessed) and that's a perfectly good substitute - as is vinegar but it's obviously got a stronger smell. This recipe is a non cook one that I've played around with to find the perfect texture for us. I've adjusted the measurements to suit metric system as I have never baked in cups/pints etc. Ingredients 300ml flour 150ml salt 2tbs oil (veg./oil/coconut) 2tbs lemon juice 250-300ml boiling water food colouring Method Just bung all the dry ingredients into a bowl, mix the boiling water (I'd use the lower amount stated and only add the extra if it's needing more moisture - if it's too wet sprinkle some extra flour) with the wet ingredients and then add to the bowl of fl...

You can pick from lots of different colours when you get your moulds made, there's even clear and sparkly ones. Was great to see the choice available to kids to help them feel it's still something fun. Obviously Elis will get a say when he's older but for now I picked these blue moulds as I love the colour on him and I hoped it would make them fairly easy to find. I thought it was time to give you all an update on Elis' journey with hearing aids. Some of you may recall my post earlier this year about his moderate hearing loss due to glue ear, something children with achondroplasia are quite prone to ( you can find the previous post HERE ). Last time I wrote we'd decided to go down the route of hearing aids before considering grommets as that involves general anesthetic and they unfortunately seem to fall out early often in kids with achon from what I've heard from others. Getting the hearing aids We made the decision to try aids first in early March: just before...

The 18th of August I found a Red Admiral caterpillar. If you look at my blog post from last year when we also raised one you'll note there's quite a difference in the colour of the two but their markings and spikes are very distinctive. It spent time munching away on nettles in our butterfly cage until the 23rd of August when it settled on the plastic roof of the cage and hung itself upsidedown - attached securely with silk webbing.  Butterflies usually make stunning pupae which are true works of art and the Red Admiral does not disappoint. They have shimmering gold patches on them as shown below. Right before emerging they start to darken in colour as their wings prepare for the world. The photo below is from the 3rd of September. Yesterday afternoon (the 5th of September) I noticed that the pupa was darkening and must've missed it emerging by minutes as when I looked soon after there was a butterfly in the cage. Gutted that ...