...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.

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