I can't believe i've left it so long since my last post. Not intentional, just fitting 24hrs into a day can sometimes be impossible.
Since my last post, Harry had a visit from his Clic Sargeant Social Worker, who has been fantastic since his diagnosis. And yes, Madeleine did point out that men have moustaches so why does this lady have one. Thankfully this was uttered once the lady had gone, but she surely must have wondered what the wide eyed 3 yr old was staring at, ahem snigger.
On a sad note, she is moving over to a different job to vet people wanting to be foster parents, she will be missed but the rest of the team are amazing.
Lynne, Harrys VI teacher came last thursday armed with his personal play plan. Matthew needs reminding not to suddenly spring up on him, and we've all to try and remember to say his name before we approach him, so not to startle him. This is one of Matthew's favourite games and when Harry is bigger I'm sure he will act his revenge on him. She left loads of noisy toys and tactile things to play with (as if we didnt already have a houseful of noisy toys) and he enjoyed all of them until she brought out a squidgy ball, with feathery rubbery tentacle things on it (whoosshh balls I think they're called) Well he hated this like the plague, twisting his arms almost out of their sockets to stop touching it, and screaming blue murder. Erm Lynn, dont think he liked that one. Try it everyday she suggested, its remained firmly in the bag ever since. I know he needs to experience lots of different touches, but I am not traumatising him doing it.
He's also developped a REALLY annoying habit, and its starting to do my head in. Anything lumpy he eats, is squidged slowly out of his mouth. William has started telling him off 'Harry thats gisgusting' and he's right, it is. I am struggling to get a full meal into him, and he's only just started growing and putting on weight I certainly don't want it to start tailing off. I've tried going back to stage one puree stuff, and even this comes out, I think he thinks its funny, and its probably payback for force feeding him that disgusting milk down his nasal tube and I hope its just a phase, but ITS NOT FUNNY.
William is my daily source of laughter. He is so funny, I threw a cushion onto the settee, but as my aim is unbelievably bad, it knocked into him. He just turned his head, and simply said 'thats not funny mummy' which caused me to burst out laughing. He then ran to Danny and in the playground singsong telltale voice he went 'daddy, mummy throw cushions at William and its not funny' making me laugh even more. I always forget to capture these moments on video, I always have my mobile on me yet still forget to whip it out.
I have gathered quite a number of followers on Twitter now, a bundle who religiously keeps in touch, some famous (ish) people, mainly some of the Welsh Rugby Team, and now have a clutch of MMA fighters. Their messages are lovely and I can't quite believe over a thousand people follow us. Thankyou you lovely people if you read this blog, the more ppl raising awareness against childhod cancer the better.
I have always watched hospital programs, fact or fiction and used to look pityingly on those suffering. When Manchester Childrens Hospital first opened, Lorraine Kelly did a documentary on it, and the Oncology ward featured greatly in it. Look at all those poor families and what they're going through, I used to say. Those poor children fighting cancer, arent we lucky.
And now, we are one of those families, and my baby is one of those poor children and now I don't feel so lucky. And my friends on Twitter with sick kids probably feel the same, especially those like Niamh who needs treatment that the UK won't offer, and wont pay for in another country. So they resort basically to begging for donations to raise the money to pay for it themselves. Its outrageous, what right has our country to deny any child any treatment that may save their life. They are totally against any form of assisted death, but yet they assist in the angeldom of these children who cannot pay for treatment. A child is born alive and has a right to life, and its our job as the human race to ensure this happens. I hope to god that Harry's treatment remains 'straight forward' and that it continues to be available in the UK (in one of two hospitals that deal with it, maybe I should change his Just Giving page to Harry's just in case fund, just in case.