Monday, April 07, 2014

...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.

Sunday, March 23, 2014

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.

Wednesday, February 19, 2014

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 around the slogan “Join Together for Better Care”.

Wednesday, February 12, 2014

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!

Tuesday, January 28, 2014

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.

Thursday, January 23, 2014

When you child's playstation habit makes you burst with pride

I really, really did not imagine I would ever write a post with the title "when your child's playstation habit makes you burst with pride", but a couple of weeks ago that is what happened.

You see I have this love/hate relationship with games consoles - the neurotypical (read non-aspie) parent in me who believes in healthy exercise, being outside, riding bikes, kicking footballs, throwing rugby balls and hours spent in a swimming pool, hates games consoles, they are a modern day evil turning our children into dribbling, square-eyed, monsters...

However, the other parent in me, the one who is trying to understand how her children tick, who is aware of the one who is differently wired, who is desperately not trying to turn in to her parents  (anyone remember the comments their parents made about your favourite bands during Top of the Pops?)........