Wednesday, August 27, 2008

August 27, 2008

Hi everyone. First and foremost, a really wonderful bit of news - Charlie's Grandpa went to receive the results of his MRI scan this afternoon, and the malignant melanoma removed from his back has NOT spread anywhere else. Phew! This is such a relief - we've all been pretty worried, but Dad was told today that there is 'nothing to be concerned about' on the scan results at the moment. Hurrah! He has to go back every three months for the next three years, and then six-monthly for the two years after that, so they are keeping a close eye on him. He and Mum are so relieved and thankful that all is as well as it possibly can be. As are we.
So, what has Charlie been up to? Well, we've just been pottering around really, enjoying the last few days of the holiday - he's been doing lots of jigsaws, drawing numerous pictures of daleks, and singing along with his favourite songs from Les Miserables. (I've been ironing all his school uniform and putting his name tags on everything... a VERY satisfying experience!!)
We're off to Exeter this weekend to visit one of my oldest friends - we haven't seen each other since Charlie was about 18months old, and she's had a baby since then, so there's quite a bit of catching up to do! We're also going to make the most of the little 'mini-break' before Chas starts school, and do a few 'holiday-ish' things. We're lining up a trip to Diggerland (where Charlie gets to drive full-size diggers and bulldozers... under supervision!) and probably the big aquarium in Plymouth. If the weather's not too awful we might venture onto the beach, but in all likelihood it'll be raining so we might head to one of the theme parks down there. (Well - you know what a speed-freak Chas is!) We're really looking forward to it.
I had a phone call from the hospital here in Cardiff yesterday, and they've asked if I'd mind being interviewed by Red Dragon radio (one of the Welsh radio stations) to talk about my experiences of having my children - both Will and Charlie - cared for at the hospital. The radio station is running the radio equivalent of a telethon to raise funds for the second phase of the Children's Hospital for Wales, and they want a few interviews with parents in varying circumstances. Should be fun, I guess - I think they're hoping to record the interview next week sometime, but nothing is confirmed yet. I think it will be recorded, rather than live, so I'm not sure when the 'radio-thon' is happening. If I do end up being interviewed, I'll try to post a link to the recording once it goes out!!
Oh, and talking of hospitals, I miscalculated when Charlie's next outpatient appointment is due - I was working it out from when he had his holter monitor in February, whereas his last checkup was actually in mid-March, so we're not due to go until the middle/end of next month.
Charlie really is on top form at the moment - he is so full of beans, and is looking really well and healthy. He is so looking forward to starting school - although he knows full well that Mummy is more than likely to cry her eyes out! We are so, so proud of him, and all that he has achieved so far - we can hardly wait to see what treats he has in store for us over the coming years!
Am attaching a pic of Charlie dressed as a fireman at 'mums and tots' this morning - admittedly, he doesn't really count as a 'tot' any more, but we've been going since he was nine months old so he has lots of friends there, and quite a few other bigger kids go during the holidays! Sorry the pic isn't great quality - I took it on my mobile.

1 comment:

Verna said...

Hello, my name is Verna Friesen. My daughter and I came upon your Will's blog when she was researching Meckel-Gruber Syndrome. I saw that that post was a while ago so I thought I would post on here instead. My daughter Jolene and her husband were told on July 30th that their unborn son had anencephaly, they were devestated. They were sent to a specialist 2 days later and he confirmed, but with the caution that it could be Meckel-Gruber Syn.
Well yesterday they went in for another ultrasound and to speak with the genetisist. They confirmed 3 ways that thier son has MGS!
SHe is devestated as they are told that 1 in 4 of their children could have this.
She is looking for someone who has been through this. There are not to many posted on line. She did find a site called Be Not Afraid and signed up yesterday and I will sign up today. I just want to thank you for blogging about your boy so that in our time of need we were able to read his precious story. By the way, Who sings the song on his blog?