Sunday, January 20, 2008

January 20, 2008

Hi everyone. Sorry - we seem to have been a bit slack at updating the blog since we got back from hospital. It's been a strange couple of weeks - for Pete and me, at least - I think because the timeframe we'd been planning our life around has been changed suddenly.
As I think I may have mentioned in the previous post, we have always hoped that we'd be able to get as far as summer 2008 before Charlie needed his fontan.
However, now we've been told that it could well be this time next year before he needs the surgery, all being well - something we'd always hoped for, but never dreamed could actually happen.
While this is, without doubt, a very good thing - for which we are VERY grateful - I think it has taken us both by surprise how hard it has been to get our heads around the change in plan. Not really in a bad way, just in a 'rug's been pulled out from under us, now we need to find a new place to put our feet' kind of way.
Anyway, now we seem to have settled into this new timeframe, and are seriously considering the things we need to have in place before Charlie starts school in September. Apart from all the fun stuff like uniforms, school bags and funky lunchboxes, we also need to speak with the school at some point to see what support, if any, Charlie will need when he starts.
We have no concerns at all over his academic ability - he is well ahead of all the milestones required of him by the end of reception year. However, we do need to figure out how he will manage some things at school - even little things like the fact that the kids do PE in their vest and pants, which will probably be too cold for him, and that he needs nagging a bit to eat his lunch need to be assessed. There will need to be further talks with the school once he has his fontan, and is on warfarin (a fairly aggressive blood thinner). It all seems quite daunting at the moment, all these unknowns. But we're guessing that it's like any new thing - once we've got our heads around it all, we'll be fine!
Anyway, enough moaning about Pete and me - back to the main man! Charlie has been an absolute superstar since we got back from hospital. In spite of his nasty encounter with a big bit of elastoplast, he seems to be singularly unphased by the whole experience.
We are so, so thankful for this, as our main concern before he went in, was that he shouldn't be traumatised by anything at the hospital, as we didn't want him to be frightened when we have to go in again.
He is speaking in positive terms about everything that happened at the hospital (apart from the plaster, of course!) and, so far, seems to be looking forward to going back again. (Although the little lucky dip bag of presents we took with us for every time he was brave may have something to do with that!)
He still amazes us with his understanding sometimes. He really made us laugh today when he was eating his lunch - he finished his chips and said 'Well, that's my carbohydrates, now I'll have some vegetables!'
He's been studying ice skating at playschool this past week - they've been putting some white plastic sheeting down and the kids have been zooming around it in their socks, and then marking each other for technical merit!! Consequently, his homework this weekend has been to watch 'Dancing on Ice' on the TV. Doh. I think I'd have preferred several pages of simultaneous equations!!
The children have also been constructing a 'hide' to watch the birds at playschool, so Charlie has now taken to throwing his toast crusts out into the back garden and sitting in the conservatory, very still and quiet, with his binoculars, bird-spotting! I'm whole-heartedly encouraging this, because it means I get my morning coffee in peace!
Nothing much else going on at the moment, but Charlie is planning his summer holiday already... he'd like to 'go back to see Tigger and Mickey Mouse again' - particularly because there are two new rides at Eurodisney - a Cars one, and a Nemo one! It would be nice to take him back, now he's a bit bigger - we'll have to see how much travel insurance is this year!
I'll try to get a new pic on soon - we're waiting for some new ones from the photographer at the moment, which I'll post as soon as I have them.
Also, before I sign off - Charlie's blog has now had more than 3,000 visitors, which I find totally amazing! More than 3,000 people, just checking in to see how things are going! Please, do feel free to leave us a message if you drop in - we'd love to hear from you.

1 comment:

The Life of a Paed Heart Transplant Recipient said...

Good to hear how things are going.

Regarding travel insurance, it might be worth giving a company by the name of Endsleigh a ring. We have found them to be absolutely brilliant, they only charged us £14.25 for Lucy for a week on a winter sports policy. All they asked us was whether the person is stable and controlled by drugs and hasn't had any surgery for their condition in the last year.

Telephone number is: 0800 0858 698

Bev xx