Quick Note

September 12, 2010
Needless to say with losing Sadie on Friday morning, I'm not really able to put the right words down, so I won't say much today.  Maybe later down the line.

Drew and I are so touched by the tremendous response from friends, family and even people we have never met. Lovely cards have started to arrive and although we cry, we are so pleased to know how loved and inspirational our beautiful Sadie was.

We would very much prefer to receive no flowers and would only ask that donations be made to Francis House Hospice as they truly made things so much easier for Sadie, Drew & I and they continue to do so.  Please make any donations directly to Francis House.

Thank you for your wonderful support. Sam X
 

06/09/10 Update

September 6, 2010
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 ...
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26/08/10 Update

August 26, 2010
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 ...
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20/08/10 Update

August 20, 2010
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 hospi...
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15/08/10 Update

August 15, 2010
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 S...
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05/08/10 Update

August 6, 2010
Sadie's had a rough few days but seems to be a lot better. We noticed that Sadie was having frequent periods where she would become highly distressed without any warning or clear reason.  It is very hard to settle Sadie when she has these episodes and she gets very upset as if she is in real pain.

Sadie's GP came to see her and arranged for us to see her consultant paedeatrician at Macc hospital.  Sadie's had an x-ray and needs an ultrasound too to see what is what.  It is thought that it coul...
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"The Sweetest Gift" by Sade

August 5, 2010
Sade dedicated this song to the Rainbow Trust Children's Charity - caring for children (and their families) with terminal / life threatening illnesses.  I didn't realise that until I'd heard it a few times and noticed how the lyrics pretty much sum up how I feel. I thought I'd share them with you...

Quietly while you were asleep
the moon and I were talking
I asked that she'd always keep
you protected
She promised you her light
that you so gracefully carry
You bring your light and shine
like the morni...
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28/07/10 Update

July 28, 2010

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 s...


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