Before children I had never paid a visit to the local accident and emergency department as an adult. When my first three came along I had a few visits there, mainly for high temperatures which were not responding to the usual treatments at home, two of those visits resulted in Xanthe being hospitalised for care so clearly my instinct that this was a genuine medical emergency was right.
Daisy's discharge from the neonatal unit also came with a gold plated, annual pass to the local A&E department however.
For the first few years after premature birth children are much more susceptible to infections which are far more serious than the usual childhood bugs, we were in and out constantly.
When I go to Glastonbury I prefer to wander around around, discovering music that I might not otherwise have heard if I stuck to a rigid list of bands I want see/the mass media suggests I see.
It was during one of these wanderings in 2013 that I found myself at the Other Stage watching the most amazing crowdsurfing I had ever seen. I saw this incredible woman being carried across the crowds with a huge train billowing behind her, and all the time she was singing, a strong powerful voice, a strong powerful song. This was my introduction to Amanda Palmer.
|Amanda Palmer Crowdsurfing at Glastonbury 2013 (from glastonburyfestivals.co.uk)|
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 (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) 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)