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Saturday, January 28, 2012

New Year's Resolution

Yes, yes, I know, I'm running a bit late - or I'm claiming Chinese citizenship/ancestry and then I'm bang on!  As with most things these days - my plans seem to be curtailed with one C & E related activity or another.  Christmas, New Year and a child's birthday basically make the end of one year and the start of the next a busy old time - and I generally forgive myself for some tardiness.

So, back to the business of the day,  that resolution.  I have caught myself countless times since W-Day (July 8th), planning for the future.  This has ranged from sorting childcare - I started looking at various options in September, despite E's mum not returning to work until January - through to making enquiries about building work we may be able to do to the house in order to provide for E's future, probably living with us.  It has even gone through to looking at a property becoming available at the back of our house - a flat.  Perfect location if he is able to live semi-independently.

Let me remind you (by you I mean myself), E is 9 months old.  I am planning for major building works and possible property purchase for a 9 month old baby - I do believe I need a reality check!

So lately I have been thinking (as per usual, about the future) and the conclusion I have come to is that the future is a long time and no mater how far we get through it, there is always more waiting.  I began to wonder what am I missing out on in the here and now - what might I regret allowing to pass me?  So my New Year Resolution (Chinese or otherwise) is to live more for the here and now - and by that I do not just mean in an appointment attending care ensuring capacity.  I mean in a roll on the floor, pull silly faces, get covered in slobber, have my fingers chewed, etc, etc capacity.

I'll let you know how I go - but the new way sounds a lot less stressful!

Friday, January 27, 2012

A Forgotten Point of Order

When i was writing my 8th of December post something happened which led to an abandoned draft... i was found out! E's mum came downstairs when she had gone to bed and not thinking about my actions, i shut the laptop a little too quickly.

This led to E's mum floating and being quite suspicious. I decided divorce was a high price to pay to keep my little secret, so showed her. She read the whole thing and gave me very positive noises. I considered stopping it,but thought someone read it and seemed to like what i had written - even if he had a vested interest in the case.  I thought longer, and begun to wonder what this cold be one day.  While right now it is an internal dialogue and what is on  my mind, one day it will represent my entire journey with the whole Williams Syndrome thing.

So i have my second member and this made me think about when I might publicise the fact I have been doing this.  I didn't think too long before forgetting all about it.  That was until E's Mum recently started a blog of her own and looked in to traffic and things.  So I looked at mine - never thought abut it - never expected it - I have never told anyone about it.  However, I have been viewed, a lot - USA, New Zealand, Russia and Germany.  I'm amazed - truly amazed - spurred on, I have decided to tell people on E's 1st birthday.  This is still for me and will remain that way until I feel that what I have to say can be deliberately aimed to help someone else.  If in the mean time it helps someone, or someone finds it interesting, I'm glad - and I think I'd even like to hear about it.

Two posts in a week - maybe I'm really getting in to this - I've certainly been thinking more about things I'd like to get off my chest or talk about on here - hopefully you'll see some of them soon.

Cheerio for today world...

Wednesday, January 25, 2012

Postcode Lottery

E's care is something which i have taken a keen interest in since we got the diagnosis. I have become mildly obsessed with his check ups and what additional care he may benefit from.

This is new to me, i usually have to reintroduce myself to my doctor each time i go and visit. So interaction with the healthcare system is a new and challenging minefield. This has been exaggerated by us apparently living in a difficult area. More on that later.

E was born and received initial care at Epsom hospital. This was chosen from 3 options for both children - ease of getting there, parking etc etc made it an easy choice. With E, the care has been amazing (to be fair it was great with C too - just shorter lived). Dr C is the lead consultant and has played a major part in the last 9 months of our lives.  He gave us the news in a very compassionate way, he has guided Es care through a confusing myriad of tests and clinics, we receive the letters and turn up - this even includes a cardiac specialist making visits to Epsom rather than us travelling up to St Thomas's (Evalina) once every 3-6 months.

So far, you are probably thinking - sounds pretty good, where's the lottery? - Us too until of course the care requirements include "portage" and "therapies".  This, in my language, is the non medical care - physio, speech therapy, occupational health.  For this, apparently we live in a "diffficult area".  This care is supplied through a doctors surgery - this is where the finding is provided - and then paid out from.  So Epsom is one borough, our doctors is in s second borough and we live in a third.  None of this stops us choosing Epsom as a hospital, or for that matter receiving care from our doctors surgery - however, this is where the simple inclusive system ends.  Take a bow Kingston health trust - take a bow!  Our surgery is in Kingston and they receive the funding for Ethan's care - however, it has taken 6 months, numerous phone calls and more letters than you care to think about from various medical professionals involved with Ethan's care.  So, where are we now after all this - apparently they have accepted their responsibility (despite us living in a "difficult area"), and the latest is - Physio - high up the list, month or so; Occupational Health - 3 months or so; Speech Therapy - "wouldn't hold you breath" - you heard me!

Until very recently we were under the misguided assumption that this was portage - but it isn't.  Portage is an all round service for pre school children with additional needs.  The borough in which we live has now made contact about this and we are being seen next month!

So Kingston, my son is not important enough to you.... well this is how important he is to me.  When recently suggested that if the hospital development care was shifted to Kingston as it may make it easier, i responded that i would sooner move house into the area covered by Mid Surrey!