still can't get my head round our boy turning 6!
May your day bring even more Lego, dude x
We met his new UK consultant the other week, and they've shown us how to test at home, and to keep a diary of results, so we can monitor the blood and protein levels and keep an eye on possible infections. Their only real advise was to keep away from anyone with Strep, as even the mildest of infections could hospitalise him again and be a total game changer as to whether he makes a full recovery or not. Since December Aran's had 3 Strep infections; we're not willing to risk another. We're in the habit now now of getting straight into A&E at the first sign of infection, and that can make a big difference.
There are still microscopic levels of protein and macroscopic levels of blood in his urine. We're told that it can take up to 6mths and 12mths respectively for these to clear up, and if after that time the kidneys aren't back to full health, they declare chronic kidney disease. What that entails we don't really know yet.
90% of kids do make a full recovery, and they feel his chances are good, but naturally can't say much more as it's such a long recovery road.
We've mostly settled into our new routine of no school or large parties, of managing playdates with his friends and their understanding parents, of regular urine testing, and nagging about drinking water and keeping a low salt diet. Apart from being slightly underweight and looking tired easily, you wouldn't really notice anything different about him. Spring has come early and Aran can play more outside, which has made dealing with the whole situation a lot easier.
But every now and then it catches up with us, and I find myself falling apart when I think about how our boy hasn't yet made a full recovery from pneumonia, and that the longer this goes on, the chances of that happening reduce. It breaks our hearts, but we're dealing with it.