TrachKids.org

Finally it happened!! We have a decision on Angus' thoracic expansion surgery. The funding has been approved, and it CAN take place in Great Ormond Street. Now we are waiting for a date. This has been such a long journey, and it's not over yet, but this is the first proper, definite decision there has been. It's terrific!!
Later this month Angus will be starting growth hormone treatment. Our only problem is getting hold of the growth hormone. The pharmacy can't get hold of the stuff the GP prescribed, so we'll need to get another script for a different brand. We've got all the stuff to do it except that. Then we have to make an appointment with the Endo nurse to administer his first dose.
Angus is eating pretty well now. He eats

• chocolate
• butter
• cheese
• Marmite
• and his new food - tinned pasta in tomato sauce

He still needs a fair bit of coaxing and reminding to eat, but he's making pretty steady progress.
Since attending his present nursery full time (he was part time last year) his speech and attention span have noticeably improved. They weren't bad anyway, but they've still got better. He has been singing more as well and remembering the words to lots of rhymes and songs.
He's got a cold and runny eyes just now, but his general health has been pretty good this year. He had one course of oral antibiotics near the start of the year, but that's all. Hopefully next year is going to be even better. If the results of surgery as as good as they can be, it's not beyond the realms of possibility that he could wean off the vent. Even if it were only during the day, it would mean a huge increase in freedom and normality for our family. Roll on 2009!!!