I wanted to write a quick update whilst I have a mo.  Sadie is in Francis House again at the moment.  We seem to be in and out of there these days and we're lucky that even with very limited beds and resources, they have not turned us away.  They are brilliant.

Sadie's condition is deteriorating rapidly and has done so steadily for 6-8 weeks really.  The worst thing is seeing Sadie having episodes of severe pain and distress.  She can go from being fairly peaceful and happy to writhing around and screaming within moments.  Often, she is very sick first, but there is no pattern and no warning.  Unfortunately the pain relief that worked initially no longer works at all so the doctors keep upping the amounts and trying different things but it means there are times when Sadie is in terrible pain.  Drew and I feel utterly helpless and nothing we can do consoles her.  We simply haold her and try to soothe her but its no use.  I doubt there can be anything much worse than having your child look into your eyes for comfort whilst they scream in agony and being unable to do anything but wait whilst various pain relief methods are tried.  No child should have to suffer like this.  Edwards Syndrome is a very cruel illness.

Luckily the staff at FH are wonderful and they always find the right way to help Sadie.  We know the combination of pain relief Sadie has now will not work for her for very long as the pain and frequency of the episodes increases rapidly, but we do have a plan of action to a certain degree now and we just have to act fast as we see changes.

I'm sorry there's nothing very positive to say at present.  Drew and I feel done in and yet it is Sadie who needs to go on fighting.  She will fight bless her because she's such a strong spirit.  We just hope and pray that we can keep Sadie comfortable and peaceful for the remainder of her days.  In between episodes, Sadie is very tired but we do still see glimpses of her beautiful personality.  We get the odd smile and 'goo'.  We're very proud of Sadie's strong energy.  I hope Drew and I continue to have the strength we need to help her through these days.

Our friends and family are wonderful and are keeping us strong. We know its a hard time for everyone who loves Sadie and believe me, she has so many people who love her.