Wednesday, March 07, 2012

Into March...

Honestly, I don't know where the time is going - Pete told me last night that I needed to update the blog because the last update I said I thought Charlie was coming down with tonsillitis... and then nothing since then!
Well, it was tonsillitis and he ended up feeling pretty rotten for a few days, a week of antibiotics and lots of INR tests because his warfarin levels were all out of whack.
He's fine now though, and his INR is back to normal.
We were also at the hospital last week for his regular cardiology appointment.
He's grown a bit - he's now 4ft 2.5ins tall and weighs about 4st5lbs. His sats were sitting happily at 91%. (And despite the fact he's full of energy and lovely and pink these days, I STILL hold my breath every time they put a sats probe on his finger - I don't think I'll ever stop!)
His ECG was fine, pacemaker is still working as it should and the consultant was very happy with his echo.
The consultant told Charlie that he's a star patient (but we knew that already, right?) and told us again that he really is an exceptional hypoplast.
I quote: "He is so lovely and pink, you just wouldn't know there was anything wrong with his heart when you look at him. Physically and academically he's a shining example of how good a hypoplast can be - his heart doesn't seem to affect him at all!"
And yes, I know it's poor form to boast about your kids, but I do it unashamedly when it comes to Charlie's heart. I know how much it meant to me when I was expecting him to hear about kids with the same condition doing well, and if it helps just one parent who has been given a new diagnosis, then I'll sing his praises until the cows come home!! :-)
We were sad to hear that our lovely consultant will be retiring at the end of this month. He has looked after Charlie since he was born and knows him really well. We will really miss him.
Hopefully we'll be able to switch to the cardiologist who looked after Charlie's heart while I was pregnant, who monitored Rosie's heart throughout my pregnancy with her, and who booked me to speak at his cardiology symposium...
I'm really hoping Charlie can be moved onto his list of patients as the thought of changing to a new doctor who doesn't know us or Charlie is pretty daunting. (It goes without saying that he's a fab doctor too, and we like him a lot!)
Rosie is getting bigger and cuter as the days go by. I won't do a proper update on her now though, because I want to write her five-month post with all her news later this week. She really is a good, happy baby though, and generally smiles from morning to night (and still sleeps all night too!) Charlie is still totally besotted with her and is such a fabulous big brother.
The garage is SO nearly finished now - I can't recommend our builders highly enough. The window is in, the new door is in, the floor is down, walls and ceiling are plastered, the cupboard is built and the lights and heating are in and working!
It's just the last bits to do now - shelves in the cupboard, door handles to put on and a few other finishing touches. Then Pete and I have to paint the walls and order the carpet, and it will be ready for him to move his desk into!
The electrician is coming back next week to tie up a few loose ends, and I think once the garage is totally finished, our fab builders will be back to make a start on the downstairs loo!
This home-improvement lark is fun!
Last weekend we went up to Birmingham for the Little Hearts Matter Open Day. It was good to catch up with old friends - and to meet new ones. Charlie was very pleased to see his heart buddy Thomas (and I was happy to have a good natter with his mum, Lindsey!) I'm attaching a pic of the pair of them glued to Pete's iPad!
Pete's chairman of the charity, so he has to speak at the AGM - he's quite reserved normally, but it always makes me so proud to see my husband standing up at the front, addressing a couple of hundred people so confidently!
Well, that's about it for now - here are a few pics to keep you going!
Watch this space for Rosie's five-month post later this week!

1 comment:

Claire said...

Hi,
Love this post! Love how well our boys are doing. I was also interested in his Charlie's height,as Danny is feeling very short for his age at the moment, bless him. He's an inch taller than Charlie, but so much smaller than his school mates, and feeling paranoid! It could just be normal boys developing later or following me with short genes, or could it be because of his heart? So, I was about to ask you how tall Charlie was! lol. Glad their about the same for their ages! :-) So glad he's doing ok, love Claire xxx