Here is a list of some of the words & their meanings that have become part of my everyday vocabulary. Sometimes I use them in the blog and forget that for the rest of the world this can all sound like gobbledegook! Please comment if you would like me to add to the list...

A surgical procedure where the appendix is used to create a channel from the bladder to the abdomen for cathterisation

Costello Syndrome:
A rare, genetic syndrome caused by a mutation ona n oncogene which increases the risk of cancerous and benign tumours, heart problems, orthopaedic issues, endocrine issues, neurologial issues and is associated with developmental delay .  The mutation is completely sporadic, the chance of having a child with Costello Syndrome is 1 in 28,000,000

A tube which goes directly into the stomach and can be used for feeding (or in Daisy's case) draining bile or decompressing the stomach

A tube which goes into the very top of the intestines, just after the stomach.  This can be used for drip feeding prescription formula, delivering medication and bypassing the stomach


In an ileostomy, the end of the small intestine (the ileum), is disconnected from the colon (large intestine) and re-routed through a hole made in the abdomen, which is known as a stoma. An external bag (stoma bag) is attached to the opening to collect waste products.

Total Parenteral Nutrition (Parenteral means by passing the digestive system), TPN is a system of nutrition which bypasses the normal enteral route to deliver a prescribed formula of vitamins, minerals and fats directly into the bloodstream, normally via a central venous catheter such as a hickman line.
HPN - home Parenteral nutrition.

bags of TPN in the separate fridge in Daisy's room

Hickman Line:
A central line which is tunnelled into a main vein (eg; Jugular vein) and is situated close to the heart.  Central lines can only be placed under general anaesthesia and there are many risks associated with their care and management. Daisy always has a hickman line emergency kit with her.
IV: Intra-venous - into the veins
Makaton - a form of sign language, developed to help people with learning disabilities communicate
Special Education Needs Co-Ordinator. The named teacher in a mainstream school responsible for pupils with special educational needs
Asperger syndrome (AS), also known as Asperger's syndrome or Asperger disorder, is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported

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