Sadie's been doing so well recently.  She's been gaining weight (11lb7 now) and she's been responding well to the physio.  Last week Lisa, Sadie's physiotherapist was very impressed with Sadie's progress.  She is able to spend time on her tummy now and turn her head more to her left.  She also amazed us when she reached out to touch a new toy and then push it away.  She did this several times with each arm so she is getting much more coordinated.  These actions sound so simple, but they are such hard work for Sadie and she is very tired afterwards.  Because she has little strength in her neck and low-tone it means she has to work very hard to do the things she wants to do, but its clear to see she is quite determined!

Sadie's really finding her vocal chords now too.  She chatters away with a huge smile on her face - she's a very happy and friendly baby!

Drew and I can sometimes go for days without thinking too much about Sadie's condition and her future.  It's always there in the backs of our minds and weighing heavy in our hearts but as a coping mechanism we seem to have trained ourselves not to focus on the upsetting thoughts because we have to get on and enjoy Sadie and our life as it is right now.  I think (hope) most of our friends and family would be able to say that Drew and I, in general seem happy and peaceful.  That said, every now and then things come along to remind us of what Sadie and we as a family will have to face.  These moments of reality hit us hard and it really knocks me for six.  This past few days has been like that and at those times it can feel like the walls are closing in and the fear we have for Sadie and our inability to protect her from the future is tough.

At the moment Sadie has a bad cold.  Sadie's condition means her immune system is low and and it also means that a simple illness can lead to other difficulties for Sadie and she may quickly deteriorate so we worry for her and have to keep a close eye on her. I've cancelled most visits and am keeping Sadie at home to rest and get lots of sleep.  She seems to be getting over the worst of it and I'm hopeful that she can shake this off.  Although she was very distressed at weekend, she seems to be coping well now and we've seen her beautiful smile return.

We can't wrap Sadie up in cotton wool and we have to accept she may catch bugs, as all kids do.  We think its important that Sadie has a good quality of life and can enjoy getting out and seeing the world.  We don't get out as much as I'd like, as Sadie can easily become distressed and we don't want to put her under too much strain, but the time that she does spend seeing the world and visiting her friends seems to make her happy, so we'll continue to do that when she's over this cold - I'll keep you posted.