Tuesday, January 09, 2007

New plumbing

I must apologise for such a long gap between posts. It has been incredibly busy here with the beginning of term and getting back into work after Christmas. I had a huge backlog of work and had to get my head down over the last week and spend every available moment writing strategy documents. I finally caught up today so here I am. Those of you owed thank-you letters and Happy New Year phone calls for Christmas presents, I am sorry, I have been thinking of you and certainly haven't forgotton. You will now get them over the next few days, I promise! William has been practising his "Happy New Ear" so will jump at the chance to offer some more greetings!

We were offline for a few days last week as we were back in Chelsea and Westminster for William's new Hickman line. He also has a nice smart new gastrostomy and combined jejenostomy. This is now attached to a small bag when Wills is in his chair or in bed to enable his stomach to drain freely as this tube does not aspirate via a syringe as effectively as the old one. This is because it is much smaller which is so much better for William. He is becoming very aware of his "gatotomy" and "tipman line" and, of course, ted has new ones too! The procedure went well but took a while as the inside flange from the old gastrostomy could not be pulled out as William's anatomy has been altered by previous surgery. In normal circumstances, this would be passed but with William's sever gut immobility it will probably just sit in his stomach for the foreseeable future! William perked up very quickly after the op and was very soon playing with his beloved "dadoot" We were in the hospital for a couple of days and when asked what the next stage was, I was told that really, there is no next stage. As things stand at the moment, William will be treated for things that pop up, like line infections, but there is really nothing else that can be done. It seems the transplant is out of the question. We are seeing another neurologist at the end of the month and we'll see what comes of that.

While we were in hospital we had the great news that lovely Emily got her lung transplant!!! You may have seen her today on Watchdog! Her blog is a total inspiration and, as I have said before, worth a read at www.pinkandsmiley.blogspot.com

Marathon training is going well and I did a 10 mile race on Sunday. I was very pleased to finish in 1 hour 37 minutes and 30 seconds, despite a long 2 mile slog up a hill twice in a 2 lap course. I have put the picture up here as it the first I have seen that makes me look half way athletic - I usually look as though I am walking! (the image has been paid for but, as yet, I have not been sent the version without the watermark. I will replace this when I receive it). The girl I am racing to the finish line is a fellow Strider team mate and we crossed the line at the same moment, recording the same time to the second! It was all very friendly and she gave me a lift home afterwards! As the long runs get longer it is going to get harder to fit them in and some very careful negotiation is having to take place, especially now Paul is back at work at the school!

The girls are back at school and Hope moves ever closer to her teenage years, spending most of her time e-mailing friends. They have been entertaining us with their dances, inspired by "High School Musical", the "Grease" for their generation - though not a patch on the original!!!

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