Ronnies doing really well and we have mastered his sleeping, which has had a positive affect on his behaviour, and he's still really enjoying school which is great.
Callum's had a few up and downs, his blood sugar dropped very low in December and January but the last few weeks have been okish. I've had the usual rollercoaster of emotions recently with everything I think as Callum's getting older its becoming more apparent that he's different. Having a child that's different isn't any less rewarding or enjoyable it just comes with more worry and uncertainty. I have moments where i burst into tears, at the most inappropriate times, but it is just so very heartbreaking at times. i often feel in a bubble with Callum, but then i see something and it just hits me and makes me realise what a struggle life will be for callum. We will, with the help of our amazing family and friends make it as easy and happy for him x
We had a letter from the genetic team today about starting the DDD genetic study, Steve and I have got to have a sample of our DNA taken as well as Callum's, and the first results could take a year and then after that who knows, but at least the ball is rolling now. We have lots of appointments coming up, a metabolic specialist to find out what's causing Callum's blood sugar problems, an endocrine specialist and we have asked to be seen by great ormond street too which we are waiting for an appointment for.
Tomorrow we have a meeting with all the professionals who help Callum to discuss which playgroup he should start in September, I've looked round a mainstream and special needs one and feel the second option would be better for Callum. (Will be glad when its over)! I've also been struggling with Callum's behaviour (if that's the right word) he has become fixated on things (the latest is sunglasses) and often does the same thing over and over again, I'm hoping to get some ideas on how to manage this tomorrow too. To be continued....
