Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Perhaps I am speaking too soon. I still want to whisper quietly in joyous song. I am becoming a mommy again ever so slowly. Everyone stand-up and cheer my daughter is coming back! We stopped the epival/depakene yesterday and will start the frisium/clobazam wean soon. It will be a slow wean over six weeks. She is incredible. She peed in the potty today. Her Daddy sat her on the potty and she peed! Her personality is emerging and itis wonderful. Of course she is not seizure free but the pediatrician does not seem concerned. I have been a determined Mommy to make Carlie Jae's life better. Speaking on her behalf and taking control, doing the research. But hey it has all been worth it. I feel like this is a change forever a change for the good but it could all be temporary so we can all cheer in a whisper Love to you all Robyn Mom to Carlie Jae 3.5yrs Ketodiet fed since March11/2001 Loved by everyone and adorable red curly hair Also Wicked Stepmom to and , Owner of two cats and a dog named Clancy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Robyn, Sending you praise and congratulations (quietly of course!) ne Recovery Road! Perhaps I am speaking too soon. I still want to whisper quietly in joyous song. I am becoming a mommy again ever so slowly. Everyone stand-up and cheer my daughter is coming back! We stopped the epival/depakene yesterday and will start the frisium/clobazam wean soon. It will be a slow wean over six weeks. She is incredible. She peed in the potty today. Her Daddy sat her on the potty and she peed! Her personality is emerging and itis wonderful. Of course she is not seizure free but the pediatrician does not seem concerned. I have been a determined Mommy to make Carlie Jae's life better. Speaking on her behalf and taking control, doing the research. But hey it has all been worth it. I feel like this is a change forever a change for the good but it could all be temporary so we can all cheer in a whisper Love to you all Robyn Mom to Carlie Jae 3.5yrs Ketodiet fed since March11/2001 Loved by everyone and adorable red curly hair Also Wicked Stepmom to and , Owner of two cats and a dog named Clancy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Robyn, Sending you praise and congratulations (quietly of course!) ne Recovery Road! Perhaps I am speaking too soon. I still want to whisper quietly in joyous song. I am becoming a mommy again ever so slowly. Everyone stand-up and cheer my daughter is coming back! We stopped the epival/depakene yesterday and will start the frisium/clobazam wean soon. It will be a slow wean over six weeks. She is incredible. She peed in the potty today. Her Daddy sat her on the potty and she peed! Her personality is emerging and itis wonderful. Of course she is not seizure free but the pediatrician does not seem concerned. I have been a determined Mommy to make Carlie Jae's life better. Speaking on her behalf and taking control, doing the research. But hey it has all been worth it. I feel like this is a change forever a change for the good but it could all be temporary so we can all cheer in a whisper Love to you all Robyn Mom to Carlie Jae 3.5yrs Ketodiet fed since March11/2001 Loved by everyone and adorable red curly hair Also Wicked Stepmom to and , Owner of two cats and a dog named Clancy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Robyn, Sending you praise and congratulations (quietly of course!) ne Recovery Road! Perhaps I am speaking too soon. I still want to whisper quietly in joyous song. I am becoming a mommy again ever so slowly. Everyone stand-up and cheer my daughter is coming back! We stopped the epival/depakene yesterday and will start the frisium/clobazam wean soon. It will be a slow wean over six weeks. She is incredible. She peed in the potty today. Her Daddy sat her on the potty and she peed! Her personality is emerging and itis wonderful. Of course she is not seizure free but the pediatrician does not seem concerned. I have been a determined Mommy to make Carlie Jae's life better. Speaking on her behalf and taking control, doing the research. But hey it has all been worth it. I feel like this is a change forever a change for the good but it could all be temporary so we can all cheer in a whisper Love to you all Robyn Mom to Carlie Jae 3.5yrs Ketodiet fed since March11/2001 Loved by everyone and adorable red curly hair Also Wicked Stepmom to and , Owner of two cats and a dog named Clancy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Robyn, This is very exciting news and you probably want to shout it from the rooftops, but I know that feeling of not wanting to speak too soon. I guess its because we all know how tenuous this seizure control thing can be, and our kids can be so unpredictable. But....hey......enjoy it (not that I need to tell you, I'm sure). You are so right.....the hard work does indeed pay off, and what a reward when we get reduced seizures, reduced meds, or start seeing the " real " kid that's been " hiding " so long. Well done. – from Melbourne, Australia; mum to Hannah, (4yo; polymicrogyria, complex partial epilepsy, ketogenic diet since 6/00 and as a result almost seizure free, spastic quad.cp, non-mobile, cortical vision impairment, possible conductive hearing loss, swallowing and respiratory issues, non-verbal, global dev. delays, 100% gtube fed by Bard button and a brilliant smile) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Robyn, This is very exciting news and you probably want to shout it from the rooftops, but I know that feeling of not wanting to speak too soon. I guess its because we all know how tenuous this seizure control thing can be, and our kids can be so unpredictable. But....hey......enjoy it (not that I need to tell you, I'm sure). You are so right.....the hard work does indeed pay off, and what a reward when we get reduced seizures, reduced meds, or start seeing the " real " kid that's been " hiding " so long. Well done. – from Melbourne, Australia; mum to Hannah, (4yo; polymicrogyria, complex partial epilepsy, ketogenic diet since 6/00 and as a result almost seizure free, spastic quad.cp, non-mobile, cortical vision impairment, possible conductive hearing loss, swallowing and respiratory issues, non-verbal, global dev. delays, 100% gtube fed by Bard button and a brilliant smile) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Robyn, This is very exciting news and you probably want to shout it from the rooftops, but I know that feeling of not wanting to speak too soon. I guess its because we all know how tenuous this seizure control thing can be, and our kids can be so unpredictable. But....hey......enjoy it (not that I need to tell you, I'm sure). You are so right.....the hard work does indeed pay off, and what a reward when we get reduced seizures, reduced meds, or start seeing the " real " kid that's been " hiding " so long. Well done. – from Melbourne, Australia; mum to Hannah, (4yo; polymicrogyria, complex partial epilepsy, ketogenic diet since 6/00 and as a result almost seizure free, spastic quad.cp, non-mobile, cortical vision impairment, possible conductive hearing loss, swallowing and respiratory issues, non-verbal, global dev. delays, 100% gtube fed by Bard button and a brilliant smile) Quote Link to comment Share on other sites More sharing options...
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