Make it so

Do I inspire you?

I heard this week that my blog has been shortlisted in the the Inspire category of the equivalent of the the blog oscars, the Brilliance in Blogging Awards or BiBs (some of you may remember that two years ago I reached the final of these awards).

Another brick in the wall

Today we sent a letter to our local education authority, we have made a request for yet another of our children to be assessed for support for special education needs - that's 3 out of four of our children who learn differently, who need support to help them access education and achieve their potential.  Realistically though it should only be one of my children who needs this extra help - Daisy is the one in special school with a learning disability, visual impairment and highly complex medical needs which limit the time she can spend in school.  It's completely logical that she should have a statement and funding assigned to her to help her reach her potential.  But my boys, differently wired, with their own unique learning styles, they have high IQ's, they are eager to learn, they just learn differently - the way they do things, their idea of success and achievement, it's totally out of kilter with our modern day, sausage machine education system.

...with a little help from my friends

This Sunday I am running the London Marathon again.  I ran it last year thanks to a golden bond place from ShootingStar-Chase, Daisy's Hospice.  Those people who know me well and follow this blog know that running is my thing, it's my way of keeping sane in this crazy world I live in.  Last year I  raised lots of money for our hospice when I ran the marathon, it was a way of giving back for everything they have done for our family over the years.

Botox, more surgery and another curve ball

It's always great when a plan comes together and the beginning of this year has seen all the frantic and stressful attempts at trying to get some co-ordination around Daisy' care paying off at last.

As we near the end of March she has already had two hospital stays involving multi-disciplinary teams and we have started getting some more plans and answers in place as a result.  The first stay, which I blogged about here)  involved surgery to assess her airway and remove a second set of adenoids.  She moved onto the neurology ward, via the urodynamics day ward and spent 3 days hooked up to a telemetry machine.  Daisy was amazing - not only had she started the week having to endure another anaesthetic and surgery, she then had to have some very painful tests on her bladder, closely followed by having EEG electrodes glued and taped to her head.

Rare Disease Day 2014

28 February 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities under the banner “Join Together for Better Care”.

Rarer than rare and a confirmed diagnosis

Last week Daisy had her whirlwind, multidisciplinary admission into Great Ormond Street where, following gargantuan planning and co-ordination efforts we managed to compress the equivalent of a month's worth of consultations and procedures into a 5 day stay.

The week started off under the ENT team where Daisy had an airway assessment (some scar tissue on the larynx but structurally OK) and removal of her adenoids.  This was the second set of adenoids she had removed, 6 years ago the first set were taken out together with her tonsils but very rarely they can grow back, and as we know with Daisy rare is a word she is very fond of!

Comic Relief, Team Honk and a little girl with a big heart

OK first things first - what in heaven's name is Team Honk?  Team Honk is the name of a social media phenomenon, driven by bloggers to raise funds and awareness for the Comic Relief charity.  You can read more about the origins of Team Honk here  - About Team Honk

2014 is a Sport Relief year (where sporting challenges become the focus for the Comic Relief fundraising) and Team Honk has come up with a brilliant way for the blogging community to be involved and hopefully raise over £20,000 for Sports Relief.