What a week!  So much has happened over the past few days.  Sadie and I ended up back in Francis House after Sadie stopped feeding and was very unwell.  She was having frequent apneas (where she stops breathing and turns blue) and just didn't want any feed.  It meant getting medicine down her was impossible too, so she was really suffering.

We took Sadie back to Francis House on Sunday night and she was fitted with a nasal gastric tube (NGT).  She's being fed that way now as she is struggling to feed orally and although she's had a little of her bottle, she gets very worn out.  We've had to reduce Sadie's normal feed intake quite significantly to a level she can tolerate, so she's feeding little and often now.

After lots of trial and error with feed levels and medicine levels we think we have it right now and she's fairly happy.

We had an appointment with Sadie's paedeatrician and for a scan yesterday.  The outcome was that there is no known reason why Sadie is in pain so much and why she is struggling with feeding.  Many things have been ruled out and we are told that basically Sadie is deteriorating as expected and although she'll have ups and downs the pattern is a clear decline.  We just have to keep Sadie comfortable with feeding levels, pain relief and she has morphine for the times when she really needs it.

We've no indication as to how long we have with Sadie still, which is very hard as it means we have to live day to day without being able to plan ahead in any way.

Sadie is being very strong and she's still so full of character.  She is very well loved by her Francis House family and she loves the attention she gets there from the staff and the kids.  Sadie loves hearing kids playing and also spending time in the Snoozelum - which is a chill out room with lots of coloured lights and different sensory things.

It was a busy week in FH and we were lucky enough to be able to enjoy the company of some fantastic kids.  Many of the siblings spend time at FH along with their poorly brothers and sisters.  The idea would have horrified me as a kid, but its so lovely to see how good natured they are about it and they genuinely have a great time because they have a great attitude.

We also spent some time with Kirsty who was staying for a few days.  She has done so much to raise the profile of FH and she's such a sweet girl and fell in love with Sadie.  Its clear she has lots of difficulties, but she is full of fun and life, so you wouldn't dream of pitying her.

Sadie and I enjoyed some visitors and it was great to see some friends.  Its not always easy to find time when its OK for visitors although they are very welcome.  That's because when Sadie's been ill I am spending time speaking to carers, doctors and nurses and it can take up quite big chunks of the day. As the doctors are not there at set times, its not always clear as to when I'll be busy.

Its great that so many of our friends and family were asking to visit.  Its quite a hard place to visit initially as the idea can be intimidating, but once you see the set up and realise its not in the least bit clinical, everyone tends to relax and enjoy the surroundings.

Well we're back home now and hoping we're all set with the right things to keep Sadie comfortable.  Drew and I just hope we have a period of calm and stability so that we can just enjoy our little girl.