Daisy has not been very well today. She was really grumpy this morning and over the course of the day her temperature was getting higher and higher - unfortunately she can only have calpol and an occassional dose of codeine but in between we had to have the windows wide open to keep her cool. This was not great considering it was below freezing outside! She's off her milk again as she had lots of diarrhea - I think this is going to be the pattern now until Great Ormond Street decide what they are going to do.
To cap it all she snapped a line again - we really don't know how that happens. This meant that her port needed to be reaccessed again which involves changing the needle to it. This was going to be done anyway on Friday so we had to bring it forward. We're waiting for her blood results to come back - I'm just hoping she's picked up the general lurgy that half the population seems to have at the moment and nothing more ominous. I'm not anticipating much sleep tonight, it seems over the years I have managed on less and less sleep, I just grab it when I can!
I nipped home for a few hours this evening as I had promised the children that we would put the tree up. It was lovely to see the house looking all Christmassy, that's the best thing about having 3 other children, with Daisy not doing too well it would be very easy just to not make the effort with Christmas, but the other 3 would not forgive me if we didn't go completely over the top with Christmas as we have done every other year.
We have packed our Operation Christmas Child shoe boxes ready to be collected from the school - we love to pack these boxes and imagine a child somewhere in the world opening presents from us on Christmas day. I have been reminding the children recently that even though they think things aren't great at the moment they are in fact so much luckier than many children. Even Daisy has done well in the lottery of life - I know I can complain at times but we have a fantastic, free, healthcare system, we live in an affluent part of the world, have a lovely home and she has two parents who are articulate and intelligent and hell bent on getting the best for her. People often Andy and I how we cope and they can't believe that we are always so positive about things - our answer is always the same - we cope because we have no choice and we are positive because believe it or not, things could be worse!
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (85) costello syndrome (43) disability (32) aspergers (19) TPN (18) cancer (18) Great Ormond Street (17) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)