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For the latest update, just keep reading below. If you would like to read previous updates (which include the diary of events from Australia) just click on the relevant link below:
UPDATE 16: March 2001 Dear Friends Dear All Just wanted to send a message to let you all know how George is doing ..... He is doing GREAT! He still has NO SEIZURES at all, which is fantastic and we seem to be getting on top of the endocrine problems too. George was admitted to Great Ormond Street hospital for 3 days at the end of January, during which time they monitored him without his DDAVP hormone. He has all his drinks and urine measured and had blood tests twice daily, and the good news is he no longer has the Diabetes Insipidus (DI), so we have now been able to stop the DDAVP for good. He had another blood test last week after being off it for a week and his sodium was normal! Hurrah! This is such great news, and means that the only real side effect from the surgery is now gone! They will still keep an eye on him, and may want to do more hormone tests in 3 months or so - to check his cortisol level again and we are awaiting another blood result for thyroxine (T4) as this has been low 2 out of 3 times (but was normal on one occasion just to confuse matters!). But even if this remains low it will mean a small daily dose of thyroxine which will be OK. In himself George is great and showing ever improving concentration, and showing much more interest in things. He will now pick up pens and use them with encouragement - to colour things in and to write the alphabet, something he never did before the op. He is also much more chatty and attentive, and generally engaging with the world to a far greater degree - we are delighted and feel full of optimism for the future. It is so great to be free of the seizures and to feel cut loose from the threat of them worsening and progressing to the drop seizures as so many other children and their parents have had to endure. We cannot thank or praise the Melbourne team enough for their pioneering work, and specifically their wonderful care of George. If anybody (especially anyone in the HHUGS group who wants to know more) just to email us personally at jillmaben@uk2.net and we will of course reply. I will get back to the group as soon as I can - I do miss hearing about all the children and families and feel rather 'cut off', so any news form you guys please cc. it to us! Thanks. This may be last update like this to the people who have been following his progress since last October - thank you all for your interest. I know from the feedback we have had from many of you that this was a unique experience which was much appreciated, and all I can say is thank goodness for email, it has provided us with such a wonderful and immediate way of keeping in touch with all of you, and once again thanks to all of you for your fantastic support and encouragement through your phone calls and email responses - they all helped more than you can ever know when we were the other side of the world embarking on our big, and at times very frightening, adventure! With love, Jill, Rob, George and Lola |