Life in the SEN Pinball Machine

Just blowing the dust and cobwebs off the blog before I begin..... not only has my trusty laptop failed me and just like in the early months of this blog I am reduced to borrowing my son's computer, I am also just about emerging battered and bruised from what can only be described a rocky start to 2013.

Life is never going to be easy parenting four children, especially when two of them require additional attention but when you are also battling the system to get your children the support and help you need then reserves run dry very quickly.

Just keep swimming........

Those readers who have followed my blog for a while know that sometimes I drop off the blogging radar, mainly because of workload at home or sometimes because I have lost my blogging mojo.  I guess the last few weeks has been a combination of the two.  Poor Andy still has his arm in plaster following a (non-alcohol related) fall the day after his 50th birthday, and this has meant my workload has gone sky high as a broken

Daisy on Text Santa

Here's Daisy's story featured as part of the Text Santa appeal show which went out in the UK on Friday evening.  So proud of my little girl!

Tis the season to be jolly

Sometimes even I am taken aback by the many twists and turns of our lives.  For all of November Daisy was in Great Ormond Street where she had a major five hour surgery, central line infection and sepsis, blood transfusions, fluid resuscitation's and various ongoing bladder infections.  Once  she was stable and the hospital were not doing any more than we would do at home (which as you know is quite a lot really!), we transferred for a lovely transitional stay to our hospice, this time the one in Hampton, Shooting Star House. 

Happy to be in the ambulance transferring to Shooting Star House

Happy Birthday Daddy Pig!

Anyone who knows Daisy well will know that one of the most important things in her life is Peppa Pig, the cartoon character - in Daisy's world she is Peppa, Jules is George, I am mummy pig and Andy is Daddy Pig.  It is an absolute sign of affection if she calls you "Pig".  Andy bears a lot of similarities to Peppa's daddy - he likes to hide away and read his paper, he's not very good at keeping fit, he loves chocolate cake and he often gets things wrong which mummy pig has to sort out!!!  But most of all, Peppa loves him, just as Daisy loves her own Daddy Pig!

Here's to the geeks - because of them I'm not alone

Sir Tim Berners-Lee, Inventor of the World Wide Web

When I left university and came to London with Andy my first job was a graduate traineeship at Mercury Communications, the telephone company set up as a rival to the de-nationalised British Telecom.  I worked in various bits of the company - from the mobile phone division, to the messaging division to managing the Criminal Justice Sector Marketing for the Government Sector Division.  At this time the internet was in its early infancy and being developed and used by techie people in darkened rooms.  Not long after I joined Mercury a new Chief Executive was appointed, his name was Mike Harris - he was (and is) a real business visionary and he spearheaded a company wide programme called Imagine 97 (bearing in mind it was 1992 at the time!!!) which was focused on getting the whole company to think about the possibilities of communication and technology offered by the company five years on (and beyond).  I vividly remember the main premise was that the communications sector would grow to offer what the company called "PIE in the Palm" - People, Information and Technology in the Palm of your hand.

Extreme Multi-tasking

On Sunday I completed my last run in the challenge I had set myself earlier this year to run 7 races to mark 7 years of care by our hospice, ShootingStar-Chase for our family.  The last race in my series of runs was the Loseley 10k - a very challenging cross country run over fields, up hills and down sandy tracks - made even more challenging by the torrential rain we drove through to get there!  I was joined by my lovely boys, Theo and Jules who had been cajoled into running the 4k version of the race.  I had also agreed to give a speech to the assembled runners on the start line about the hospice and what it means for our family.  This is what I mean when I titled this post extreme multi-tasking  - really how many other people turning up for that race had had to get up several times the night before to administer pain relief to their child, disconnect her TPN, rouse the reluctant boys, battle through driving rain and closed roads then stand up and give a speech before jumping off the stage and running 10K across muddy fields????

It's all in the mind

I've been thinking more and more about mental health issues and emotional welfare over the past few months.  When you are so bogged down in the diagnosis, the medical stuff, the "just getting it all done" it's easy sometimes to forget the wider impact of what is happening.  Day in day out we take for granted the pain and discomfort Daisy goes through, the interventions she has to tolerate, the discomfort she constantly feel.  It's been part of her life and our lives for as long as she has been with us and in our determination to keep Daisy away from hospital Andy and I have become experts in many medical procedures and interventions.  When she was discharged home from the neonatal unit we soon learned how to pass a naso-gastric tube so that we could avoid midnight drips to A&E to get one passed, later we learned how to change her gastrostomy button, then when she needed TPN to survive we learned how to administer the intravenous drip and drugs that keeps her alive, change the dressings around the line, manage her ileostomy stoma and catheterise her mitrofanoff stoma into her bladder.