Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Thanx Gretchen (and and ), Guy Fawkes night this yr was a huge success, with a very different to last yr, taking it all in and marvelling at all the fireworks with everyone else Paranoid ole' me told him to close his eyes every time there was a particualry bright repetitive one, even tho he is not photo-sensitive, but he was pretty good about my clucking, sighed inpatiently a few times and obliged provided the only small drama - despite being told at least a hundred times not to, he picked up a sparkler that had only just gone out, so he had a small blister on his hand as a result yesterday. There's always one..... V glad that Ethan is continuing to do well too Gretchen, onwards... ----- Original Message ----- From: gretchen_kissock , I read your post about going happily back to school recently and your reflections on the state of things one year ago. I am so happy for you! Our story is pretty similiar, when I think where we were one year ago. The same feelings hit me in mid October, because that was the anniversary of Ethan's hospitalization and worst of times. Give the happy guy a hug for me! Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 I am so happy for you. I can remember last year when was sick. I think those hard times we experience will always remain with us and the good times are so much more of a joy. Sometimes the bad just makes us appreciate the good so much more. Like the fireworks last night. I'm sure you so enjoyed that. Last year was in the hospital on Thanksgiving. I am really looking forward to this year. Congrats and I so hope the wean goes well. For us, the lower we got down on the depakote was the harder but just hang in there and know that there can be light at the end of the tunnel! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Yes , you are right, it was probably the best yr I have ever had on fireworks night, dating back to way before the seizures raised their ugly head. I do think of in particular actually with each of these nerve wracking dep reductions, it is like I am waiting for the other shoe to drop each time we go a step lower, knowing how hard the wean was for him, as well as some other kiddies on here. We still don't know what effect weaning it all last yr had on , we do know it was all good intially, and then it hit the fan when the last 200 mgs had been gone for about 3 weeks. But as you know, there was a zillion other things going on here at the same time, recovering from going catabolic, carnitine introduced, ketones thru the roof, diaz biting harder than ever - ugh, memories.... We don't have Thanksgiving here in NZ, but since making contact with so many US families via the net, I do expect to be giving my own thanks here in my own way. I hope you have an enjoyable celebration that will hopefully ease the memories of last yr. ----- Original Message ----- From: lloydandleslie@... I am so happy for you. I can remember last year when was sick. I think those hard times we experience will always remain with us and the good times are so much more of a joy. Sometimes the bad just makes us appreciate the good so much more. Like the fireworks last night. I'm sure you so enjoyed that. Last year was in the hospital on Thanksgiving. I am really looking forward to this year. Congrats and I so hope the wean goes well. For us, the lower we got down on the depakote was the harder but just hang in there and know that there can be light at the end of the tunnel! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Yes , you are right, it was probably the best yr I have ever had on fireworks night, dating back to way before the seizures raised their ugly head. I do think of in particular actually with each of these nerve wracking dep reductions, it is like I am waiting for the other shoe to drop each time we go a step lower, knowing how hard the wean was for him, as well as some other kiddies on here. We still don't know what effect weaning it all last yr had on , we do know it was all good intially, and then it hit the fan when the last 200 mgs had been gone for about 3 weeks. But as you know, there was a zillion other things going on here at the same time, recovering from going catabolic, carnitine introduced, ketones thru the roof, diaz biting harder than ever - ugh, memories.... We don't have Thanksgiving here in NZ, but since making contact with so many US families via the net, I do expect to be giving my own thanks here in my own way. I hope you have an enjoyable celebration that will hopefully ease the memories of last yr. ----- Original Message ----- From: lloydandleslie@... I am so happy for you. I can remember last year when was sick. I think those hard times we experience will always remain with us and the good times are so much more of a joy. Sometimes the bad just makes us appreciate the good so much more. Like the fireworks last night. I'm sure you so enjoyed that. Last year was in the hospital on Thanksgiving. I am really looking forward to this year. Congrats and I so hope the wean goes well. For us, the lower we got down on the depakote was the harder but just hang in there and know that there can be light at the end of the tunnel! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Yes , you are right, it was probably the best yr I have ever had on fireworks night, dating back to way before the seizures raised their ugly head. I do think of in particular actually with each of these nerve wracking dep reductions, it is like I am waiting for the other shoe to drop each time we go a step lower, knowing how hard the wean was for him, as well as some other kiddies on here. We still don't know what effect weaning it all last yr had on , we do know it was all good intially, and then it hit the fan when the last 200 mgs had been gone for about 3 weeks. But as you know, there was a zillion other things going on here at the same time, recovering from going catabolic, carnitine introduced, ketones thru the roof, diaz biting harder than ever - ugh, memories.... We don't have Thanksgiving here in NZ, but since making contact with so many US families via the net, I do expect to be giving my own thanks here in my own way. I hope you have an enjoyable celebration that will hopefully ease the memories of last yr. ----- Original Message ----- From: lloydandleslie@... I am so happy for you. I can remember last year when was sick. I think those hard times we experience will always remain with us and the good times are so much more of a joy. Sometimes the bad just makes us appreciate the good so much more. Like the fireworks last night. I'm sure you so enjoyed that. Last year was in the hospital on Thanksgiving. I am really looking forward to this year. Congrats and I so hope the wean goes well. For us, the lower we got down on the depakote was the harder but just hang in there and know that there can be light at the end of the tunnel! Quote Link to comment Share on other sites More sharing options...
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