Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 I know that feeling of waiting for the phone to ring, and every time it does you answer with your heart in your throat. Gosh I wish there was an easier way of life for you and that I lived close by to help you out. One day alone with a seizing child is more than enough to make you crazy, and I know that you have four kids and lots of issues to survive every day. The whole weekend must have been tough. I am thinking of you and pray that things will improve for Crystal and that life will settle down for you. Take care my friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 Hi Chris Hannah was a cutie wasn't she? So many people commented on her hair and her smile, the two biggest blessings if ever I saw any. The smile was such a gift to all those who saw it. I'm glad you liked the booklet. I prepared it in one day, and I believe that everything in it was just " meant to be " . Hannah's sevice was such a joyful tribute to her, people were even clapping to some of the songs we sang, and I was almost dancing at one point. Even now as I recall it, I am amazed. Hugs and kisses to Crystal, and I hope that the new year brings some welcome news about her treatment. I'll be thinking about you on Jan 2nd. Take care Chris. love ----- Original Message ----- I was thinking of you & your family on Christmas. About a day or two earlier, I recieved the package that you sent to me. Your Hannah was the most darling child. What a face !!! I wish I had hair like that !!! Those curls !!! I think that you did a beautiful job putting together that memorial to her. I will keep that booklet & cherish it always. I hope that the New Year brings in a time of healing & joy to your family. We're here for you for as long as you might need us < smile > .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 Hi Chris Hannah was a cutie wasn't she? So many people commented on her hair and her smile, the two biggest blessings if ever I saw any. The smile was such a gift to all those who saw it. I'm glad you liked the booklet. I prepared it in one day, and I believe that everything in it was just " meant to be " . Hannah's sevice was such a joyful tribute to her, people were even clapping to some of the songs we sang, and I was almost dancing at one point. Even now as I recall it, I am amazed. Hugs and kisses to Crystal, and I hope that the new year brings some welcome news about her treatment. I'll be thinking about you on Jan 2nd. Take care Chris. love ----- Original Message ----- I was thinking of you & your family on Christmas. About a day or two earlier, I recieved the package that you sent to me. Your Hannah was the most darling child. What a face !!! I wish I had hair like that !!! Those curls !!! I think that you did a beautiful job putting together that memorial to her. I will keep that booklet & cherish it always. I hope that the New Year brings in a time of healing & joy to your family. We're here for you for as long as you might need us < smile > .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Dear Chris Hoping that Crystal's seizures are improving, and that you are all able to get at least a little rest. Thinking of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Dear Chris Hoping that Crystal's seizures are improving, and that you are all able to get at least a little rest. Thinking of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Dear Chris Hoping that Crystal's seizures are improving, and that you are all able to get at least a little rest. Thinking of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 Is gabatril the new med, and when will the VNS be turned on? Looks like things might be on the UP. Sure sope so! Love ... She is on a new med. I hope it's going to be the one to help control her seizures. Between the Gabatril & the Vagal Nerve Stimulator, I have my fingers crossed... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 Is gabatril the new med, and when will the VNS be turned on? Looks like things might be on the UP. Sure sope so! Love ... She is on a new med. I hope it's going to be the one to help control her seizures. Between the Gabatril & the Vagal Nerve Stimulator, I have my fingers crossed... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 Is gabatril the new med, and when will the VNS be turned on? Looks like things might be on the UP. Sure sope so! Love ... She is on a new med. I hope it's going to be the one to help control her seizures. Between the Gabatril & the Vagal Nerve Stimulator, I have my fingers crossed... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 , its good to see that Crystal is improving, and enjoying some " normal Crystal time " . Hoping that she improves day by day and that the VNS will be on soon. Any pain at the site? Take care luv'hugs (mum to angel Hannah, wings 13 weeks ago) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 Great Chris. Here's to a great year, especially the next few weeks of changes, and all good ones I hope, Love Yesterday, she didn't have too bad a day. She had her periods of spaciness, but only one tonic seizure. I hope that continues as well. Less seizures, more lucidness - that's our goal !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 Great Chris. Here's to a great year, especially the next few weeks of changes, and all good ones I hope, Love Yesterday, she didn't have too bad a day. She had her periods of spaciness, but only one tonic seizure. I hope that continues as well. Less seizures, more lucidness - that's our goal !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 You are right, they just cant get it, because they have not experienced it the same way as we have I suppose. The reality of their experience is so different. I also feel guilty when I am too tired/ busy to listen. The fire worry right where we live is not as great as in many areas of our state. There have been lots of homes burned or threatened, but so far we have been well away from them. But always have to be vigilant, especially as we are not too far from a semi rural area, and just past that is a state forest. Water restrictions mean that we can hand hose our gardens, so I am looking after Hannah's rose garden with extra TLC every day. Got another rose bush given to me yesterday to mark her birthday last Sunday. There are such thoughtful peolple in this world who really uplift your spirits. Take care and give miss C a smooch from me ----- Original Message ----- From: Chris I love her dearly, but I'm too weirded out to sit & listen to her tell me ( for the second time ) about a dream that she had months ago. Is it me ??? Am I being unfair ??? I remember when I was a girl, feeling badly cause my mom wouldn't pay any attention to me. Now I'm doing the same thing to my kids. The circle of life, I guess < sigh > ... It must be terrible, worrying about fire. Is winter your rainy season ??? I hope your region gets plenty of rain, & soon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 You are right, they just cant get it, because they have not experienced it the same way as we have I suppose. The reality of their experience is so different. I also feel guilty when I am too tired/ busy to listen. The fire worry right where we live is not as great as in many areas of our state. There have been lots of homes burned or threatened, but so far we have been well away from them. But always have to be vigilant, especially as we are not too far from a semi rural area, and just past that is a state forest. Water restrictions mean that we can hand hose our gardens, so I am looking after Hannah's rose garden with extra TLC every day. Got another rose bush given to me yesterday to mark her birthday last Sunday. There are such thoughtful peolple in this world who really uplift your spirits. Take care and give miss C a smooch from me ----- Original Message ----- From: Chris I love her dearly, but I'm too weirded out to sit & listen to her tell me ( for the second time ) about a dream that she had months ago. Is it me ??? Am I being unfair ??? I remember when I was a girl, feeling badly cause my mom wouldn't pay any attention to me. Now I'm doing the same thing to my kids. The circle of life, I guess < sigh > ... It must be terrible, worrying about fire. Is winter your rainy season ??? I hope your region gets plenty of rain, & soon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 You are right, they just cant get it, because they have not experienced it the same way as we have I suppose. The reality of their experience is so different. I also feel guilty when I am too tired/ busy to listen. The fire worry right where we live is not as great as in many areas of our state. There have been lots of homes burned or threatened, but so far we have been well away from them. But always have to be vigilant, especially as we are not too far from a semi rural area, and just past that is a state forest. Water restrictions mean that we can hand hose our gardens, so I am looking after Hannah's rose garden with extra TLC every day. Got another rose bush given to me yesterday to mark her birthday last Sunday. There are such thoughtful peolple in this world who really uplift your spirits. Take care and give miss C a smooch from me ----- Original Message ----- From: Chris I love her dearly, but I'm too weirded out to sit & listen to her tell me ( for the second time ) about a dream that she had months ago. Is it me ??? Am I being unfair ??? I remember when I was a girl, feeling badly cause my mom wouldn't pay any attention to me. Now I'm doing the same thing to my kids. The circle of life, I guess < sigh > ... It must be terrible, worrying about fire. Is winter your rainy season ??? I hope your region gets plenty of rain, & soon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 So glad to hear Crystal is getting better, it's just going to keep getting better. Take care and hang in there. and Kennedy(3 1/2yrs.,pmg) > >Reply-To: polymicrogyria >To: polymicrogyria >Subject: ... >Date: Tue, 28 Jan 2003 09:44:07 -0500 > >Yep, gabatril is the new med. The VNS gets turned on 2/6... I can't wait... >Yesterday, she didn't have too bad a dayShe had her periods of spaciness, >but only one tonic seizure. I hope that continues as well. Less seizures, >more lucidness - that's our goal !!!! > >Love yah... > >Chris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 So glad to hear Crystal is getting better, it's just going to keep getting better. Take care and hang in there. and Kennedy(3 1/2yrs.,pmg) > >Reply-To: polymicrogyria >To: polymicrogyria >Subject: ... >Date: Tue, 28 Jan 2003 09:44:07 -0500 > >Yep, gabatril is the new med. The VNS gets turned on 2/6... I can't wait... >Yesterday, she didn't have too bad a dayShe had her periods of spaciness, >but only one tonic seizure. I hope that continues as well. Less seizures, >more lucidness - that's our goal !!!! > >Love yah... > >Chris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 So glad to hear Crystal is getting better, it's just going to keep getting better. Take care and hang in there. and Kennedy(3 1/2yrs.,pmg) > >Reply-To: polymicrogyria >To: polymicrogyria >Subject: ... >Date: Tue, 28 Jan 2003 09:44:07 -0500 > >Yep, gabatril is the new med. The VNS gets turned on 2/6... I can't wait... >Yesterday, she didn't have too bad a dayShe had her periods of spaciness, >but only one tonic seizure. I hope that continues as well. Less seizures, >more lucidness - that's our goal !!!! > >Love yah... > >Chris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 - thanks hon...I so appreciate the support. How has Kennedy been doing ??? Better I hope. Crystal had a mixed day today. Some pretty bad periods of extreme spaciness with an inability to keep her head up. Then she had some periods where she was running around & playing with her brothers. She's had two tonic seizures today, the 1st worse then the second. I think she might have had at least one more that I missed. When I checked on her sitting in her wheelchair watching TV, she was very out of it. She's due to be medicated soon & then it's bedtime for her. Because of her med schedule & her seizures, she has her nights & days somewhat mixed up. She gets all perky in the evening & is reluctant to settle down to go to sleep...Oh, well. I'm just happy to see her being herself again. Right now she's watching Charlie Brown in her bedroom. I can hear her " talking " to the TV... It's just so hard getting her to sit down when she wants to walk around. She'll walk around like she's drunk out of her mind, falling into everything around her. She'll even fall down on her butt. STILL, she refuses to sit in her wheelchair or her rifton chair. She is one stubborn kid !!! Give the girls great big {{{ HUGS & KISSES }}} for us... Lotsa luv to you all... & little Princess, Crystal Aquielle.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 - thanks hon...I so appreciate the support. How has Kennedy been doing ??? Better I hope. Crystal had a mixed day today. Some pretty bad periods of extreme spaciness with an inability to keep her head up. Then she had some periods where she was running around & playing with her brothers. She's had two tonic seizures today, the 1st worse then the second. I think she might have had at least one more that I missed. When I checked on her sitting in her wheelchair watching TV, she was very out of it. She's due to be medicated soon & then it's bedtime for her. Because of her med schedule & her seizures, she has her nights & days somewhat mixed up. She gets all perky in the evening & is reluctant to settle down to go to sleep...Oh, well. I'm just happy to see her being herself again. Right now she's watching Charlie Brown in her bedroom. I can hear her " talking " to the TV... It's just so hard getting her to sit down when she wants to walk around. She'll walk around like she's drunk out of her mind, falling into everything around her. She'll even fall down on her butt. STILL, she refuses to sit in her wheelchair or her rifton chair. She is one stubborn kid !!! Give the girls great big {{{ HUGS & KISSES }}} for us... Lotsa luv to you all... & little Princess, Crystal Aquielle.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 - thanks hon...I so appreciate the support. How has Kennedy been doing ??? Better I hope. Crystal had a mixed day today. Some pretty bad periods of extreme spaciness with an inability to keep her head up. Then she had some periods where she was running around & playing with her brothers. She's had two tonic seizures today, the 1st worse then the second. I think she might have had at least one more that I missed. When I checked on her sitting in her wheelchair watching TV, she was very out of it. She's due to be medicated soon & then it's bedtime for her. Because of her med schedule & her seizures, she has her nights & days somewhat mixed up. She gets all perky in the evening & is reluctant to settle down to go to sleep...Oh, well. I'm just happy to see her being herself again. Right now she's watching Charlie Brown in her bedroom. I can hear her " talking " to the TV... It's just so hard getting her to sit down when she wants to walk around. She'll walk around like she's drunk out of her mind, falling into everything around her. She'll even fall down on her butt. STILL, she refuses to sit in her wheelchair or her rifton chair. She is one stubborn kid !!! Give the girls great big {{{ HUGS & KISSES }}} for us... Lotsa luv to you all... & little Princess, Crystal Aquielle.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 Kennedy is doing well. I have been sick with brochitis and trying not to breath on her too much. She is rolling all around and lifting her head when she is on her tummy so I know the hip is not bothering her like it was before. Hope Crystal continues to improve, she is such a little trooper. and Kennedy(3 1/2yrs.,pmg) > >Reply-To: polymicrogyria >To: polymicrogyria >Subject: RE: ... >Date: Tue, 28 Jan 2003 22:51:13 -0500 > > - thanks hon...I so appreciate the support. How has Kennedy been >doing ??? Better I hope. Crystal had a mixed day today. Some pretty bad >periods of extreme spaciness with an inability to keep her head up. Then >she >had some periods where she was running around & playing with her brothers. >She's had two tonic seizures today, the 1st worse then the second. I think >she might have had at least one more that I missed. When I checked on her >sitting in her wheelchair watching TV, she was very out of it. She's due >to >be medicated soon & then it's bedtime for her. Because of her med schedule > & >her seizures, she has her nights & days somewhat mixed up. She gets all >perky in the evening & is reluctant to settle down to go to sleep...Oh, >well. I'm just happy to see her being herself again. Right now she's >watching Charlie Brown in her bedroom. I can hear her " talking " to the >TV... >It's just so hard getting her to sit down when she wants to walk around. >She'll walk around like she's drunk out of her mind, falling into >everything >around her. She'll even fall down on her butt. STILL, she refuses to sit in >her wheelchair or her rifton chair. She is one stubborn kid !!! > >Give the girls great big {{{ HUGS & KISSES }}} for us... > >Lotsa luv to you all... > > & little Princess, Crystal Aquielle.... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 Kennedy is doing well. I have been sick with brochitis and trying not to breath on her too much. She is rolling all around and lifting her head when she is on her tummy so I know the hip is not bothering her like it was before. Hope Crystal continues to improve, she is such a little trooper. and Kennedy(3 1/2yrs.,pmg) > >Reply-To: polymicrogyria >To: polymicrogyria >Subject: RE: ... >Date: Tue, 28 Jan 2003 22:51:13 -0500 > > - thanks hon...I so appreciate the support. How has Kennedy been >doing ??? Better I hope. Crystal had a mixed day today. Some pretty bad >periods of extreme spaciness with an inability to keep her head up. Then >she >had some periods where she was running around & playing with her brothers. >She's had two tonic seizures today, the 1st worse then the second. I think >she might have had at least one more that I missed. When I checked on her >sitting in her wheelchair watching TV, she was very out of it. She's due >to >be medicated soon & then it's bedtime for her. Because of her med schedule > & >her seizures, she has her nights & days somewhat mixed up. She gets all >perky in the evening & is reluctant to settle down to go to sleep...Oh, >well. I'm just happy to see her being herself again. Right now she's >watching Charlie Brown in her bedroom. I can hear her " talking " to the >TV... >It's just so hard getting her to sit down when she wants to walk around. >She'll walk around like she's drunk out of her mind, falling into >everything >around her. She'll even fall down on her butt. STILL, she refuses to sit in >her wheelchair or her rifton chair. She is one stubborn kid !!! > >Give the girls great big {{{ HUGS & KISSES }}} for us... > >Lotsa luv to you all... > > & little Princess, Crystal Aquielle.... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Dear Chris I am soooo pleased to hear that the VNS seems to be making an improvement. In Crystals case, shortening that post ictal phase is so important to prevent further injuries. You must be delighted, although I know its only early days, and I hope and pray that your little one continues to improve. As for being snowed in, not sure that it would be a good thing, but sure feels like it beats the drought we've been experiencing. Last night it began to rain, and its still coming down steadily at lunchtime today. Wonderful stuff! WTG Crystal, playing that PC game by herself. That's exciting news. Hugs to all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 I sure will, we've been trying to get things figured out about heading down that. Cody is 7 & it'd be prime time for him. Hugs to you all1 K. Quote Link to comment Share on other sites More sharing options...
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