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.

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?)........

Reflections & Resolutions

This is the toughest time of the year for us Special Needs Parents, New Year brings with it not a sense of expectation but almost a sense of dread  - what will this year throw at us? Where were we this time last year, where are we now?

For me it is a point in time, close to Daisy's birthday where we can mark where we are with her, and it tends to take all my normally optimistic and mindful outlook to drag myself out of the gloom and focus on the year ahead as I look back on what has happened so far.

Merry Christmas

Merry Christmas everyone.  We have had a hectic few days celebrating Daisy's 9th (yes, can you believe it 9 years old!) birthday and preparing for Christmas.  Here's a beautiful picture of us all meeting Santa in Harrods on her birthday.

Life is pretty tough with lots of seizures, intravenous medications and an ever increasing workload but moments like this and the chance to celebrate another year with Daisy make it all worthwhile.

Wherever you are, thank you for reading my blog and sharing my journey  - have a peaceful and relaxing festive season.

Steph & Family xxx

Aspie Christmas Everyone!

I love Christmas.  I love the preparation, the carols & cheesy songs, the parties, the socialising, the decorations - in fact I guess I'm a bit like Buddy from the film Elf when it comes to Christmas.

Product Review: Firefly GoTo Seat by Leckey

Yes , you read right, I'm doing a product review.  Guess what, it's for a product that at the moment Daisy can't even use but I think it's so fab I wanted to review it and tell you all about it.

Over the years, as the world has become more savvy about providing for the needs of disabled children products have been developed that are aimed at making their, and their parents lives a bit easier.  When I saw the GoTo seat I just wished it had been around a few years ago when Daisy was a bit smaller - because it would really have been a godsend.  How often did we find ourselves leaving Daisy confined to her special needs buggy in restaurants because the high chairs were not safe for her to sit in with her poor tone, or travelling to visit friends, we would have to lug her large, special needs chair which did not fold down and took up even more space in our full to the brim car.