Sadie's had a rough few days but seems to be a lot better. We noticed that Sadie was having frequent periods where she would become highly distressed without any warning or clear reason.  It is very hard to settle Sadie when she has these episodes and she gets very upset as if she is in real pain.

Sadie's GP came to see her and arranged for us to see her consultant paedeatrician at Macc hospital.  Sadie's had an x-ray and needs an ultrasound too to see what is what.  It is thought that it could be her brain sending signals which causes painful spasms or it may be her kidneys.  We'll hopefully know soon and see what we can do to alleviate the pain.

We're pleased to report that it isn't believed to be heart failure, which was our big concern.  We have also been told that Sadie appears more robust than most babies with Edwards and although complications can start at any time, it is possible she may be in the 10% of children with Edwards who make it to their 1st Birthday.

It may sound odd, but whilst we want Sadie with us for as long as possible, we only hope for her to have a peaceful, comfortable and pain free life.  Our primary concern is that she doesn't suffer. We just want her to be happy, so if we are lucky enough to have Sadie with us for a little while longer we just hope with allour hearts that it doesn't cause her any pain or suffering.

Sadie still has a horrible cold so she is sleeping in our room most of the time as she gets upset.  Its actually really nice having her back by my bedside in her moses basket, but I do tend to spend far too much time leaning over and gazing at her.  Sadie's not been feeding well because of her cold but I'm pleased to report she hasn't lost weight, so the health visitor is coming next week to keep a eye on that.

All in all, over the last couple of days Sadie has been really happy and she laughs and smiles lots - especially when Drew blows raspberries on her!  Sadie even managed a physio assessment this week and everyone was very pleased with her progress - it's slow progress but there are very clear changes which is great as its clearly making Sadie happier.

Now that Sadie seems a lot happier, I feel much happier too.  I had been extremely low for several days as it is just so hard to keep positive sometimes but our family and friends are so kind and thoughtful and just know how to support us.  We're very lucky.

I am now officially unemployed as it was announced earlier this year that I would be made made redundant (along with many of my colleagues). It devastated me when I first heard as my career means so much to me and the future (especially our financial future) just seemed so scary and unknown.  I have got my head around it all now and in fact think it was the best thing that could have happened job-wise as Sadie needs full-time care and getting her into a nursery may not be appropriate or possible.  I was recently successful in claiming Disability Living Alowance for Sadie which means I have also been able to register as a full-time carer.  This makes life a little easier so we're not worrying too much about the future for now and just focussing on each day and enjoying what we have.