Tuesday, May 27, 2008

May 27, 2008

Hello everyone - well, another month has almost gone, and yet again I've been really slack at updating the blog! All is well though, and Charlie's on top form.
He broke up for half term last Friday, and he had a really busy few weeks at playschool - he's been practising getting changed for PE, trying on the school uniform and been going to birthday parties every two minutes!
We've been buying bits of his school uniform now, and although we've yet to get his tie and shoes and a few other bits, he tried it on the other day, with a little tie he already had... he looks SO grown up! I did take a few pictures, but I won't post them now - I'll wait until his first day at school and take some proper ones then!
He's really ready for school now, and is itching to get started. We have a meeting there on June 10, and he'll meet his teacher properly and have another look around. I've been putting together a little folder of information for his teacher - Little Hearts Matter sent us their 'filofax' about hypoplastic left heart syndrome, along with some info about warfarin (which Charlie will be on after his Fontan surgery). I'm also going to write a page or two about Charlie specifically and what they'll need to watch out for. I don't want to be thought of as a neurotic mother, but I think it's important that the school realises exactly how serious HLHS is, and what they need to be watching out for - particularly because Charlie generally looks so well.
We were thrilled recently to come across a man in America who has HLHS - he is 30 years old, and a veterinary surgeon. Although his heart is slightly different from Charlie's, (the main vessels going into his heart are the wrong way round so, unlike Charlie, he did not need an aortic reconstruction during his stage one surgery) his second and third stage surgeries were the same as Charlie's and his circulation now, to all intents and purposes, is the same as Charlie's will be after his next op. I've been in touch with this remarkable man by email (and also his mother, who has written me some lovely emails about life as a parent of an older hypoplast) and it is so amazing to hear of someone who has succeeded in life - in spite of a very sticky start - and has fulfilled his wish to be a vet... hardly the easy option. As his mum said, 'We always told him that he could use his brain instead of his body, because sports were out for him.'
We have always hoped as much for Charlie - that the things he can do, and succeed at, will more than outweigh those things that he can't. It is hard to explain how much it meant to us to hear success stories like this one - we live from day to day with Charlie, making the most of every minute, so it is wonderful to be able to look forward to his future - a productive, successful, happy future, with real hope.
Just as an aside, we're off to the hospital here in Cardiff on Thursday to get Charlie fitted with another 24-hour holter monitor, to keep an eye on what's going on with his funny heart rate. He'll have it put on first thing Thursday morning, and we have to drop it back the next day. We'd be really pleased if there's no sign of the heart block, but that's pretty unlikely, so we're just hoping it's not getting any worse.
So, what else have we been up to since the last post... nothing too special really, although we have booked a holiday to Salou in Spain next month. Charlie was so desperate to go somewhere hot again, so we used the rest of the vouchers Pete won from work to put towards the holiday. Now we can't wait - especially with the weather being so awful here.
We've also joined the rest of the world in the Wii Fit craze - we managed to snap up one of the balance boards, and we're getting quite addicted to it. Only problem is, you look pretty stupid hula-hooping without a hoop, and ski-jumping with no skis so we tend to hide behind the sofa if anyone walks past the front window! Charlie loves playing on it - almost as much as he likes watching us dancing about on it! One little thing that makes us all smile is that you create 'Miis' - little people who you add features to, to make them look like yourself as you play the games. We've made quite a few - Pete, me, Charlie, Nanny, Grandpa and various other friends and family, but Charlie was insistent that we made a Mii to look like Will. Obviously that took a little imagination on our part, but Will was duly created and now appears regularly as we are playing the games.
I know it sounds a bit daft, but even though they are only little cartoon figures, it makes us so happy to see ourselves on screen, with both of our boys beside us.
Am attaching a few recent pics.

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