Today Rosie and I headed over to Bath to meet my friend Monica and her husband Darian.
I have known Monica for years now - since Charlie was very small - but only by email and on FB... because she lives in Chicago!
Her daughter, Celine, has hypoplastic right heart - which is very similar to Charlie's condition - and Monica runs the 'Be Not Afraid' website, supporting parents who carry their baby to term despite a life-threatening antenatal diagnosis, which I've got in the sidebar over there -->
Monica and Darian are doing a whistlestop European tour - London, Bath, York, Edinburgh and then on to Venice in Italy - so it was brilliant to be able to catch up with them on the Bath leg of their tour!
Even though the weather was pretty vile, we had a lovely wander around Bath Abbey, a coffee stop and a tour around the Roman Baths (all while talking nineteen to the dozen!)
You can't take pushchairs around the baths, so they let you borrow baby carriers to go on your back.
Rosie's never been in one before and was pretty impressed! She had lots of fun trying to ring Nanny on the audio commentary phone thing, and finally dozed off, resting her head on the back of my neck! It was much easier than trying to manage her buggy, but she weighs almost 28lbs now so I think I'm about two inches shorter now than I was when I started!
Monica and Darian gave us some top tips for our Florida trip next year, and who knows - we might even be able to catch up again then!
They brought some fabulous presents for Charlie and Rosie - Chas is now the Chicago Cubs' newest fan, and Rosie is rocking the stars and stripes!
A really fabulous day - so great to meet them in real life at last!
I snapped this pic today as the kids were sitting on the windowsill in the chemist, waiting for a prescription.
Rosie was just leaning in to hug her big brother - she was saying 'aaaaah' as she cuddled him. :-)
They really do get on so well - he's so proud whenever she learns something new. She always cheers and claps her hands when he comes home from school and loves to join in with whatever he's doing.
Life is busy, days are full, I don't get a minute to myself... but I wouldn't have it any other way!
Hi folks. I thought I'd put up a few recent pics of our cheeky monkeys. I am SO aware that I've got a backlog of things I need to post (Charlie's Alfie Boe concert and a 'what's Rosie up to these days' for starters...) but if I wait until I have time to sit and write a long post, I'll never get anything on the blog.
The days are whizzing by, and I don't want to miss out on recording memories because I'm trying to keep things in chronological order!
Charlie and Rosie are both on good form, and have really enjoyed the sun over the last couple of days. (Although they were both a bit peeved that it was cold and rainy again today...)
Charlie is in the middle of a three-week swimming course with school - he's enjoying it lots, and as he has to wear a tracksuit every day, I'm enjoying not having to iron all the school shirts!
We had his flute repaired the other day because one of the keys wasn't closing properly, so he can play properly again now and is practising for an end of term concert. He's getting pretty good (although he'd be even better if he practised a bit more often!!) and I like that he's learning to read sheet music at such a young age.
Rosie's growing up too fast, and I think she's going to be a tall one - we were at a toddler group this morning and she was a good couple of inches taller than kids a couple of months older than her. Looks like she's got her dad's genes there!
She was very pleased to find a Postman Pat van at the supermarket the other day - particularly because of his black and white cat... she has a small cuddly black and white cat called Hamley which she carts all over the place with her.
Charlie never had a toy like that when he was little - I mean, he's had Max the dog and Clackety the crab since he was little, but he never used to take them out of his bed or out of the house. Rosie, however, nearly always has Hamley stuck under her arm. It's quite sweet to see - she likes to give him drinks from her cup, and feed him bits of whatever she's eating, but he's pretty grubby already and I'm terrified that he might get lost!
I snapped up Rosie's Little Tikes car on eBay the other day (feel free to admire my lovely new path in the background of the photo...) and when I went to collect it, it turned out that I knew the lady selling it! She was another heart mum who spoke at the same fetal cardiology symposium as me back in 2010 - it was so lovely to see her again, albeit a bit of a surprise!
Anyway, it's late, so I'm going to hit the hay. I will endeavour to get Charlie's Alfie Boe pics uploaded pronto, so I can start catching up with myself!
That's all for now folks!
Here's a pic of Charlie at the hospital this morning, having his flight test.
We needed the test to see what happened to Charlie's sats in air with a lower oxygen content, because although we've flown shorthaul quite a few times, he's never been on a LONG flight before, and we need to know if he'll need oxygen on standby.
The cylinders on either side of him are oxygen and nitrogen, and are used to create air equivalent to that in the cabin of an aeroplane flying longhaul.
Anyway, his sats were 90-91 in air before we started, and only dropped to 84-86 during the test. (Pre-Fontan, his sats were always low-mid 80s anyway, so he's pretty used to that level of O2!)
The technician then tested him with 2L of O2 through nasal cannulae which brought his sats back up to normal.
So although the technician can't give us a yes/no, both he and we were pleasantly surprised by how well Charlie's sats held up.
We'll obviously speak to his consultant to see what he recommends, whether he needs O2 on standby or not, but hopefully we should be all systems go soon to book a rather fab holiday for next spring! :-)
Hi folks - I've been a bit under the weather this week, so blogging has taken a bit of a back seat.
I know I still need to write about the Alfie Boe concert Charlie and I went to last week (which was pretty amazing... just wait until you hear about it!) and I also need to do an 18-month(ish) post for Rosie-Pie, but I'll do both of those later when I've got a bit more time.
Charlie's studying art and artists at school this term, and he's been doing a lot of Andy Warhol-style pop art. He was pretty pleased to find out that I had a photo app on my phone to turn any image into pop art... you can see the results of his experimenting above!
He's got a three-week intensive swimming course coming up with school, so I need to speak to his teacher to make sure that they manage him ok. He's usually alright in the water, but if the instructor has the kids getting in and out of the water and standing on the side while they're waiting their turn, he'll get cold very quickly. He's doing brilliantly with his swimming though, and was awarded his Level 4 badge and certificate at his last lesson.
Rosie is on good form - she's getting so grown up, and is still madly in love with Mr Tumble off 'Something Special'. I'm quite amazed how much Makaton sign language she's picking up from the programme.
She's saying more and more words too - she's really sussed out the 'ee' sound this week, so we've had 'please', 'cheese' and 'seeds' amongst other words.
I don't know if you remember the picture of her when she was really little, sitting in her Bumbo seat, watching the clothes going round and round in the dryer - well, washing-watching is obviously still good fun, because this week I found her sitting on the floor in front of the washing machine, watching the laundry spinning while scribbling on a bit of paper with my zebra-print biro!
Who needs toys, eh!
Hope you've all had a good weekend!
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!