I know I'm long overdue for a post, but things have been rather hectic here of late. It's half term next week though, so hopefully I can find some time for a catch-up post. In the meantime, here's a pic of Rosie - she is getting so grown up, it scares me!
All is well here, although life is as busy as always!
Charlie is up to his neck in rehearsals at the theatre, but loving every minute. He's also preparing for the national tests at school next month, so his teachers are giving the class lots (and lots) of practice papers to do.
I can't believe he's into his final term at primary school - I've just had to apply for his bus pass to get to secondary school in September, and we're starting to look at uniform lists and the like. He also starts meeting the teachers and visiting the school from next month onwards.
Pete and I, and probably the liaison nurse from the hospital too, will have to make a couple of extra visits to the school, just so they're fully aware about his heart. Or as Pete calls it, 'our annual scare-a-teacher day'!
Do you like his new T-shirt? His heart friend Danny was wearing the same one on his mum's Facebook page the other day, so I asked her where she'd got it from and ordered one for Charlie too - after all, we definitely need to 'Remember, remember the fifth of November' because it's Charlie's birthday!!
Rosie is on top form and still loving playschool. I just had to fill in the form for her sessions there next year, and she'll be going five days a week - four mornings and one afternoon. She's growing up so fast.
She's also spent this morning playing with a cardboard box - so far it's been a house and a car, and now it's a bed, from which to watch Topsy and Tim on the Kindle!
It was Rosie's friend Nell's birthday party yesterday, and Rosie was so excited to go to her party - she even wore her new dress for the occasion! She's getting so grown up now and will tell anyone who'll listen that she'll be four on her next birthday. (Never mind that it's still six months away!)
Oh, and check out Owen's mum's blog in the sidebar - he's doing so well. Still a way to go, but he's such an amazing boy!
Those who have read here for a while might remember that I mentioned a little boy called Owen Simmons, back in July 2013. His mum's blog is in the sidebar on the left.
Owen was born with HLHS like Charlie, but owing to high lung pressures was unable to have his Fontan surgery. So his medical team opted for transplant, which went ahead in July 2013. He recovered brilliantly and has done amazingly well ever since until this week.
He had a stomach ache on Monday, and his tummy became swollen and distended the next night. He was taken into hospital for a scan the following morning, and they found that his new heart is not working well at all.
Nobody really knows why it has happened, and it is a terrible shock for his family as all was well at his last check up in Februrary.
Things have deteriorated frighteningly quickly, and Owen is now on ECMO (full life support) while they await the results of a heart biopsy.
It is heartbreaking to read his mum's blog posts and Facebook updates. They are in the middle of a terrifying, nightmarish situation, which has suddenly appeared out of nowhere.
I know his parents Andrea and Carson would appreciate your thoughts and prayers.
We woke up to a gloriously sunny Easter morning, so thought we'd make the most of the weather and head off for a wander around the lake at the park.
We took the leftover bread from the emergency loaf we bought at St Fagans yesterday, and the various ducks, geese, moorhens and swans (plus a few gulls) had a feast!
The kids had a lovely time, and after a play on the swings we headed home, so they could attack their stash of Easter eggs.
Now I just need to avoid eating any of the chocolate...
Happy Easter, everyone!
St Fagans is the Welsh National History Museum, and it's not far from where we live. It's great for a wander round, with lots of interesting old buildings to peep inside. You don't even have to pay to get in, so it's a bargain day out!
We heard they had an Easter egg hunt on today, so when the weather looked good, we decided it was worth a visit.
The sun came out and the kids had a great time wandering round, looking for the answers to their hunt clues.
We'd stopped at the supermarket on the way there to grab a picnic lunch, so we found a sunny bench to sit and eat.
Unfortunately, that was when we discovered that we'd somehow left Charlie's lunch behind at the shop. Doh.
There's a little old-fashioned working bakery at St Fagans, so I went to see if they had something for him to eat. Unfortunately they didn't do sandwiches, but he was very pleased to end up with a small, hot-from-the oven, crusty loaf, which he happily scoffed! He's not really a big sandwich fan anyway, so plain hot bread was right up his street!
There were a few old-fashioned rides and stalls there for the holiday weekend, which the kids enjoyed.
They finished the egg hunt and took their completed quiz sheets back, and were given an Easter craft kit and a chocolate egg each. (Rosie demolished hers in about two minutes flat, while Charlie's saving his for tomorrow, so no doubt she'll be angling for a bite of his in the morning!)
We explored a bit more, and then headed home - all the blossom is starting to come out now, and there's a bit of warmth in the air. I can't wait to be able to abandon our winter coats and gloves at last! (Although having said that, knowing Wales it'll be snowing and blowing a gale by tomorrow...)
Welcome to Charlie's News! Charlie was born on November 5, 2003, minus the left side of his heart - a complex congenital heart defect known as Hypoplastic Left Heart Syndrome. He had two open-heart surgeries in his first five months, and had his third stage Fontan completion in March 2010, aged six-and-a-half.
Charlie's heart is special - but not as special as he is!