Family matters

Whilst writing my blog post this morning, it occurred to me that I haven't mentioned the boys in quite a while so here's the latest. 

Things are generally going well. Both boys are now severely deaf and they cope so well with this, thanks to the wonders of technology. Their hearing aids do a fantastic job and at school they use radio aids. They've also developed amazing lip reading skills, so gone are the days when I could get away with whispering to James whilst they're in the room! 

Kidney wise, things are stable. Joe takes medication to protect his kidneys from further damage and this is working well. Yes he has reduced kidney function but the decline is slow and within what's expected for a boy of his age. Evan's kidneys are holding up well, so he doesn't need to take medication as yet. We are now on six monthly check ups with all the specialists involved and they book double appointments for both lads; a lot more manageable than them seeing each specialist separately, every three months.

In other news, we now know that Evan is on the autism spectrum, with Aspergers. This explains a lot as Evan has always been different to the average boy of his age (in lots of good ways!) It took a long time for the doctors to disentangle the deafness and autism stuff, because they are both in play at the same time. Getting a diagnosis has been helpful from the point of view of understanding Evan and helping him to understand himself, but less helpful in terms of support because unfortunately there isn't much available. 

In general, both boys are doing really well. Joe has just chosen his options for year 9 and Evan is about to finish primary school, so will be joining his brother at high school in September. Joe has a brilliant social life through high school, so we are hoping Evan will blossom in a similar way. Evan is still playing the drums and has recently added the trumpet to his musical repertoire.  

We will be moving house any day now, so that's our main focus at the moment. Just a few short weeks now until the school holidays - we can't wait to spend them in a house with a garden!