TrachKids.org

So, it's September. Last week I got word that the Americans can come over between the 5-13th December this year. It's much further away than I'd hoped but it's the closest we've come to getting a date for surgery since the start of all this. Why the big delay since funding was approved?? Well, the Prof in GOSH was stone-walled by the head of ICU who thought that treating kids like Angus wasn't really GOSH's remit/cost effective/etc. The Prof then had to present his case to the Rare and something Diseases group within GOSH. Then we had to wait for their approval, and eventually this all cam eto pass, but the most frustrating thing was that for months we didn't have a clue what the delay was and even whether anyone was doing anything. It was very disheartening after thinking things were more or less done once the funding was approved.
It looks like it's really going to happen now, but we've been at this too long to really think it's going to be straightforward. People could get ill, Angus could get ill, swine flu could strike with a vengeance etc. The possibilities for disappointment are endless. I try not to be too negative, but it seems prudent when there have been so many unseen obstacles along the way.
Angus started school 2 weeks ago. He's on half days until the end of this month. He's enjoying it, but finds it very tiring as he can have fair distances to walk within the school. He's still on the vent and O2 full time and is becoming increasingly unhappy about it. He has a power chair for use during break times so he can move quicker without getting tired, but it does rather separate him from the other kids. He and I talk occasionally about the benefits of being small - we both agree that the best is him being easy to pick up and cuddle. We're fortunate in having a number of good friends with other forms of dwarfism who are very positive role models. I don't see Angus having major issues with his size for a number of years.
One thing he is starting to have an issue with is his extra fingers. He says he wants to get rid of them. We really don't want him to because they're part of him (and we think they're cute), but if he still feels that way in a few years, we will have to discuss this more practically with him. He doesn't like the way they stick out when he makes a fist (no-one in the family has pointed that out to him). It's going to be a tough call. I'm so tempted to be a coward and leave it until he's legally in charge of his own body and then he can go ahead and do what he wants, but I don't want him to get to a stage where he's miserable about it as a kid.