Sadie had a really tough week as she was quite poorly over the weekend and continued to have episodes ofprolonged distress where she cannot be consoled in any way and she gets to a level where it is clear she is in a lot of pain and discomfort.  Sadie is generally a very happy little girl so we know that for her to get to such a level of distress there must be a real reason.

After seeing Sadie's paedeatrician again on Tuesday it was agreed that she would benefit most from the help at the hospice as it is important to focus on managing the pain rather than spending time trying to find the cause.  Although we'll still work with the hospital to look at the cause, it is clear that there could be more than one reason for Sadie's distress and we must not let her suffer so the Francis House Children's Hospice are the very people to help with pain management as they are truly expert in making children with terminal conditions comfortable.

Francis House were amazing. They took us in on the Tuesday morning and arranged for all 3 of us to stay for 3 nights.  Drew and I were encouraged to stay in one of the parent flats which are in the same (purpose-built) building.  Although it was hard to hand over responsibility, we agreed and found we were able to enjoy some good nights sleep.  There is a member of staff assigned to each child 24 hours a day so we knew Sadie was in good hands and that they would alert us if she needed us.

Drew went back to work from the hospice in Didsbury each day and I stayed with Sadie.  Its a really nice environment and doesn't feel clinical.  The idea is for it to be a home from home so its a very relaxed atmosphere.  It was good to meet other parents with poorly children and also some who had lost their children and still received aftercare support from Francis House.  Its obviously a hard place to go to as no parent ever expects to be taking their little baby to a hospice but we are so thankful we have that facility available and we know that Francis House will support us from here on in and for as long as we need them.

Sadie had a tough time as she has been feeding far less than normal and she also had a couple of bouts of sickness, which is unheard of for Sadie.  With the help of the doctors and nurses at FH we seem to have her medication and daily pain relief under control and we also have some stronger pain relief available for Sadie as and when she needs it.  It was upsetting for Drew and I to take the decision that morphine (in very small quanitity) should be given to Sadie but it helped her so much and we know it will help her more if and when things become more difficult for her.

I could write for hours about FH and how wonderful it is but I won't do that right now.  Do visit their website if you have time though!

Sadie and I came home today.  It was scary but we have to manage things ourselves and we know the team at FH are only a phone call away.  Noone can tell us what exactly is going to happen to our beautiful little girl.  We know her prognosis remains unchanged and that there are several indications that her body is slowing down and not working so well for her now.  We're trying to stay in good spirits as Sadie doesn't want to see us looking miserable and there just isn't time to sit about feeling sorry for ourselves, so we'll just try to carry on as we were for as long as we can and continue to enjoy Sadie.

Finally I have to add how proud we are of Sadie.  She is such a little trooper and nothing keeps her down for long.  She's always ready with a huge smile whenever she can.  She's going through things that most adults would find unbearable and yet she always finds something to smile about and is still very chatty.

Oh one more thing.... Drew and I were really touched at the support we have continued to receive.  We have such great friends and family and we feel very lucky to know you're there rooting for us, so thank you.