Its been an awful week for our family. Sadie has been increasingly upset and distressed and spends the majority of her time unsettled, crying and often screaming for prolonged periods.  Looking back we have seen this build up over several weeks and its clear to see Sadie is in a lot of discomfort and pain.

We have seen and spoken with her GP and paedeatrician and Sadie now has some paracetamol that she takes in suppository form as she will not take oral medication.  Sadly this has not helped Sadie.

When the health visitor came on Friday she weighed Sadie and we discovered she had lost a pound in one week, which is a huge percentage of her body weight.  Were told to take Sadie to children's ward straight away as she would need to stay in for a few days of observation.  This broke our hearts as we headed for the hospital not knowing if this may be the last time we had Sadie at home.

At the hospital Sadie was fairly settled (very frustrating really when we're trying to explain how she is in pain the majority of the time) and the paedeatrician sent her home for the weekend with an appointment for Tuesday to be continued weekly now.

We were given 3 different types of medicine for reflux just in case that is the cause of her pain as it is common in babies with Edwards Syndrome. Howevver these medicines have not reduced Sadie's distress levels, although she is feeding a little better.

Given how Sadie has been over this weekend, we intend to call the doctor on Monday and request she be seen again on children's ward for observation and to look at pain relief whilst the cause of this pain is looked into.

In between all this crying and distress, Sadie has periods of calm where she sleeps and smiles and seems fairly restful and we hope we can get her back on track to being comfortable again very soon.

Its very upsetting for Drew, myself and our family to see Sadie in such a way and so we're all pretty exhausted and low.  However, we have lots of support and as its a beautiful day, Drew and I are taking advantage of a couple of hours respite as Nana Collins looks after Sadie, so we're heading for a stroll to ease our tension.

We'll keep you posted, but its not so easy to find time to blog these days!