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!

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...

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!

Dadddy's Boy

It seems like just days ago when I as writing about the fact I would be writing here more often - and now when I look it was two months ago - can't change that now - and after all its a promise to myself as this is an internal thing more than anything.


Anyway, onto the point of writing today - it is a celebrate post for me - E is a great is Dadddy's boy.  C, his older bother is a real Mummy's boy - which is a source of much frustration when he won't let me do anything for him and whenever I ask him to do something he respond "want Mummy".  E however reacts when i arrive home from work - i get sqwauked at if I don't show him some attention immediately that I arrive.  When i play with him, I get the biggest "Williams" smiles (for anyone stumbling upon this who does not know about that special smile I'll sort a pic soon.  I know its me as his Mum can spend all afternoon trying to get smiles and they come when I get home!  I know this is not such a delight for his Mum, who woks hard looking after them all day - but for me its the first time I've really experienced t in the 3 years C has been around.


Perhaps he knows that his Mum will be much better at dealing with all of this than me - perhaps he knows I have already had my days where I don't really know how to plan for him (and i don't deal well with that).  In a strange way he is making it impossible for me to ignore the here and now as it's so nice for me to spend time with him, which reminds me.... its play time - E has been very patient, just making his little noises while C watches some TV - play time then work!


Next time a medical update and a study in brotherly love - some things Williams does not get in the way of, perhaps even enhances.

Dark Days and Sleepless Nights

Yesterday marked 3 months since we were formally notified of Ethan's diagnosis.  This has made me return to my blog which has been neglected a little - and makes me think i need to return to the original purpose for setting it up - to help me - to give me a vent.

I have recently been having some very dark days, filled with fear of what the future will bring - and as much as I tell myself to worry about the here and now and let the future worry about itself.  However, I am a planner, i am always looking at what needs to be in place in order for other things to happen.  Of course with C, this is easier - we have planned his entering school, we have decided on the school - we have put financial planning in place to fund his education to whatever level he wants to take it.

In my head I cannot justify not doing the same for E, he is just as much my son - however deep down i then start thinking about the support he will possibly need, the fact he may never leave home, the fact we may need to make alterations to our house for him, the fact that what we had planned is now not really relevant.

This, along with the start of the cold season and the accompanying sick children makes for a very grumpy me.  Better days are coming, i know that and i am just trying to get through to then.  Next week we go to the UK conference - and we will look into the seminars on financing, and probably just take the time to speak to other families and realise again.... we are not alone.

Be back more frequently in future....

E's Dad is fundraising for Williams Syndrome Foundation

E's Dad fundraising for Williams Syndrome Foundation

This is that start of a very long campaign - to raise funds for the Williams Syndrome Foundation and to raise awareness. I'll post more about the Half Marathon, fundraising and the current place I'm at on my journey as a Williams Dad - just realising how difficult it is to keep up with a Blog - but I will get better - 2 weeks holiday with my boys has blown me off course a little. I've got a target now - i can do something about this!

What a Difference a Day Makes

OK... day may be abbreviating things a little - but it still stands  We've had a gap between this and the last post as E had surgery on his hernia (its been one of those weeks).  We had got used to a pattern wth E - 1 good day followed by 2 bad days.  The bad days were full of bad constipation and a good bit of reflux, which showed itself in a lot of crying and not much sleeping (esecially overnight).  The good day would be a similar pattern - but with the difference of less screaming in between short sleeps.

E's surgery was surprising - he was allowed out of hospital the same day, and all of our fears with regards the anaesthetic were not required. Our little man was dealng with the pain petty well, considering he was only 17 weeks old on the day it took place, and that initially he was only given half dose pain medication.

So, yesterday was a trying day - E slept a lot - but in arms, never in his cot, relied on pain medication and just wasn't himself.  This follwed a night of zero sleep for Es mum which put me in charge in the morning, to try and give her some rest.

Today, E has played, got tired and gone to sleep, got hungy and eaten.  He's had very little pain medication and generally been a great little boy.  We had a hiccup this evening, where he just wouldn't seem to go down, but we eventually concluded that may be he was in pain and just gave him a littte of the good stuff, just to take the edge off.,  He's now down, and i'm no going to be too far behind - i find myslef dozing off while trying totype this - and i am fighting a losng battle.

We were worried about this surgery, but so far it seeems like it has solved a lot of the problems which were cauing him difficulies in this early stage.  I'm not naive enough to think that this is the last worry we will have about E, but we are relieed this one seems to have gone so well, and acheived some relief for our little man.

C ejoyed a cople of days with Nanny and Gaga in the caravan and cant wat to go back.