Learning a new vocabulary

Over the years we have added to and expanded our vocabulary of medical and special needs terms - in the early days it was the language of NICU (neonatal intensive care unit) with NG feeding, cpap, jaundice and corrected age creeping into our conversations, then it was genetics speak, then Costello Syndrome speak and before long we found ourselves holding our own with Daisy's doctors as we spoke about gut inflammation, fluid balances, neuropathies and myopathies, stomas, catheters and TPN.  You know you're an intestinal/bladder failure parent when you know all the reference ranges for your child's main blood tests, or you start photographing the different shades of bile that they produce from their free drainage, or when you get excited because their fluid balance chart adds up!

A tale of 3 Marathons (The Postscript)

I am now the proud owner of 3 marathon medals, the newest and the shiniest is my medal for the 2013 Virgin London Marathon which I completed in 4 hours and 19 seconds - darn you unravelled shoelaces, you cost me a sub four!!!  In fact my garmin watch does tell me that I completed the marathon distance in 3 hours and 58 seconds but weaving in and out of other runners adds precious inches to that distance.

A tale of 3 Marathons

For those of you who don't know, on Sunday 21 April I will be joining 35, 0000 other people in running the Virgin London Marathon 2013.

If you follow this blog you will know that I returned to running in January last year, joining my local club, Wimbledon Windmilers and taking on the challenge to run 7 races to mark the 7 years of care our family have received from our wonderful hospice, ShootingStar-Chase.  You can read more about this here This Mother's Day I will be mostly... and here Fundraising for our Hospice.

Why vaccination is a no brainer for me

There is currently a measles epidemic in South Wales.  Measles epidemic?  A disease that was almost eradicated in the UK? But we have a UK wide vaccination programme - how can it be possible?

How can it be that  the UK had the second highest number of measles cases in Europe last year with 1,902 confirmed cases  not including the new cases in South Wales?  (The European total was 8,230).

It seems in the UK we are still paying the price for the scaremongering caused by the flawed "research" by Andrew Wakefield claiming a link between the MMR Jab & autism. His hypothesis is that he found a new form of bowel disease that was only present in autistic children and he linked this to the MMR jab.   And so he opened Pandora's Box as parents made the connection between MMR and Autism, despite the original Wakefield report being shown to be completely flawed, the author to have multiple conflicts of interest and to have manipulated evidence, despite Andrew Wakefield being struck off the Medical Register by the General Medical Council. Despite multiple studies which showed no link between the MMR vaccine and autism the seed of doubt had been sown in the minds of otherwise intelligent people.

What I told the Minister (& what I would have told him if I had more time!)

So what do you get when you put 11 very opinionated, passionate, at the end of their tether Mothers of children with Special Needs Children in a room with the Minister for children?  A meeting that almost became a group therapy session that could have run all day if the very harassed clock watching aides would have allowed it.

I'm third from the left in the black dress

I met with Edward Timpson, MP - officially known as the Parliamentary Undersecretary of State (Children & Families) earlier this week as part of a delegation of Bloggers with an interest in SEN invited by the Tots100 bloggers forum.  We were specifically invited to discuss our experiences of the Special Education Needs system - each of us bore our individual battle scars from our dealings with the system and over and over the same themes came up, and in a way it was good to know that I was not alone in my battle to ensure that ALL my children achieved their potential, regardless of their ability or disability, age or gender.