Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Thanks for sharing your daughter's success. It is by God's hand that these developmental milestones are being met! Hold fast to your course, but even more so to your GREAT JOY! Every child's milestones should bring such happiness! Every child deserves such opportunities! > > > > That's fantastic news! It's very exciting! I hope one day we will find the right mix for Leila. > > > > > > > > Seizures are Low! > > To: polymicrogyria > > > > > Hi, > > > > > > I just wanted to share some good news about our family. Has > > > been a long time since we posted but I do follow the threads. > > > > > > My daughter, andra, is now 4 and as BPMG. Typically, she > > > was having 15 seizures per day. Myoclonic and tonic clonics. > > > After three years, seven drugs, three diets, we are down to 0 or > > > 1 seizures per day. She is on Keppra, Lamictal and Felbital. > > > > > > We can't figure out why the drop occurred because we implemented > > > three different strategies as once. We added an extra dose of > > > Lamictal in the afternoon; we began weekly cranial sacral > > > therapy and put her back on the low glycemic index diet. And, > > > we don't care. We're staying the course. > > > > > > The other good news is that she is walking. It's amazing to > > > watch and she just giggles. She takes about 10 steps at a time > > > and has already figured out how to get down to her knees to > > > obsess about her toys. > > > > > > Thought I'd share with a group of parents that can really " get " > > > how truly great this is. Sure hope this isn't another honeymoon > > > period. It's the longest honeymoon period we've experienced! > > > > > > Rochelle > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2010 Report Share Posted April 29, 2010 Rochelle Hi so WONDERFUL AND EXCITING ABOUT ALEXANDRA AND WALKING. I remember when Caleb first started walking 2 years ago when he was 5. It was the most exciting thing I had ever seen. I danced around for the next week. Hold on to your happiness and write some of it down it is fun to look back on it. Rejoicing with you and so excited. I remember her from the conference what a doll you have. Carpenter and Caleb > > Hi, > > I just wanted to share some good news about our family. Has been a long time since we posted but I do follow the threads. > > My daughter, andra, is now 4 and as BPMG. Typically, she was having 15 seizures per day. Myoclonic and tonic clonics. After three years, seven drugs, three diets, we are down to 0 or 1 seizures per day. She is on Keppra, Lamictal and Felbital. > > We can't figure out why the drop occurred because we implemented three different strategies as once. We added an extra dose of Lamictal in the afternoon; we began weekly cranial sacral therapy and put her back on the low glycemic index diet. And, we don't care. We're staying the course. > > The other good news is that she is walking. It's amazing to watch and she just giggles. She takes about 10 steps at a time and has already figured out how to get down to her knees to obsess about her toys. > > Thought I'd share with a group of parents that can really " get " how truly great this is. Sure hope this isn't another honeymoon period. It's the longest honeymoon period we've experienced! > > Rochelle > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2010 Report Share Posted April 29, 2010 So happy for you Rochelle. It's pretty amazing what we become grateful for!!! Enjoy these times. I always say if Lindsey ever walked we have a " walkin party " !! Congratulations. I know it must be thrilling! I oculdn't be happier for you! Blessings, Bonnie Subject: Re: Seizures are Low! To: polymicrogyria Date: Thursday, April 29, 2010, 2:54 AM  Rochelle Hi so WONDERFUL AND EXCITING ABOUT ALEXANDRA AND WALKING. I remember when Caleb first started walking 2 years ago when he was 5. It was the most exciting thing I had ever seen. I danced around for the next week. Hold on to your happiness and write some of it down it is fun to look back on it. Rejoicing with you and so excited. I remember her from the conference what a doll you have. Carpenter and Caleb > > Hi, >  > I just wanted to share some good news about our family. Has been a long time since we posted but I do follow the threads. >  > My daughter, andra, is now 4 and as BPMG. Typically, she was having 15 seizures per day. Myoclonic and tonic clonics. After three years, seven drugs, three diets, we are down to 0 or 1 seizures per day. She is on Keppra, Lamictal and Felbital. >  > We can't figure out why the drop occurred because we implemented three different strategies as once. We added an extra dose of Lamictal in the afternoon; we began weekly cranial sacral therapy and put her back on the low glycemic index diet. And, we don't care. We're staying the course. >  > The other good news is that she is walking. It's amazing to watch and she just giggles. She takes about 10 steps at a time and has already figured out how to get down to her knees to obsess about her toys. >  > Thought I'd share with a group of parents that can really " get " how truly great this is. Sure hope this isn't another honeymoon period. It's the longest honeymoon period we've experienced! >  > Rochelle > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2010 Report Share Posted April 29, 2010 That is really wonderful news! Our beautiful Rowan just turned 3 and also learned to walk at that time. I cried when I came home from work and she walked up to me instead of crawling! We haven't had to deal with seizures yet (thank god) but keep praying for miracles every day and then boom they quietly appear. The best christmas present I ever got was this past year when I heard the word " mama " come out of her mouth. I promised God I would never ask for anything else if she could just say mama. Miracles do happen. Never give up on these kiddos they will surprise you! > > > > Hi, > > > > I just wanted to share some good news about our family. Has been a long time since we posted but I do follow the threads. > > > > My daughter, andra, is now 4 and as BPMG. Typically, she was having 15 seizures per day. Myoclonic and tonic clonics. After three years, seven drugs, three diets, we are down to 0 or 1 seizures per day. She is on Keppra, Lamictal and Felbital. > > > > We can't figure out why the drop occurred because we implemented three different strategies as once. We added an extra dose of Lamictal in the afternoon; we began weekly cranial sacral therapy and put her back on the low glycemic index diet. And, we don't care. We're staying the course. > > > > The other good news is that she is walking. It's amazing to watch and she just giggles. She takes about 10 steps at a time and has already figured out how to get down to her knees to obsess about her toys. > > > > Thought I'd share with a group of parents that can really " get " how truly great this is. Sure hope this isn't another honeymoon period. It's the longest honeymoon period we've experienced! > > > > Rochelle > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2010 Report Share Posted April 29, 2010 Hi Rochelle, So great to hear such good news ... it's so, so marvellous to live the so great progresses of our sweet babies... only who is living this process can understand the marvellous God's presence through these improvements! Keep on enjoying your hapiness, honeymoons can last for ever and turning better & better as time goes on. A big hug for andra and you. m. paula To: polymicrogyria From: ladydagger27@... Date: Thu, 29 Apr 2010 18:25:10 +0000 Subject: Re: Seizures are Low! That is really wonderful news! Our beautiful Rowan just turned 3 and also learned to walk at that time. I cried when I came home from work and she walked up to me instead of crawling! We haven't had to deal with seizures yet (thank god) but keep praying for miracles every day and then boom they quietly appear. The best christmas present I ever got was this past year when I heard the word " mama " come out of her mouth. I promised God I would never ask for anything else if she could just say mama. Miracles do happen. Never give up on these kiddos they will surprise you! > > > > Hi, > > > > I just wanted to share some good news about our family. Has been a long time since we posted but I do follow the threads. > > > > My daughter, andra, is now 4 and as BPMG. Typically, she was having 15 seizures per day. Myoclonic and tonic clonics. After three years, seven drugs, three diets, we are down to 0 or 1 seizures per day. She is on Keppra, Lamictal and Felbital. > > > > We can't figure out why the drop occurred because we implemented three different strategies as once. We added an extra dose of Lamictal in the afternoon; we began weekly cranial sacral therapy and put her back on the low glycemic index diet. And, we don't care. We're staying the course. > > > > The other good news is that she is walking. It's amazing to watch and she just giggles. She takes about 10 steps at a time and has already figured out how to get down to her knees to obsess about her toys. > > > > Thought I'd share with a group of parents that can really " get " how truly great this is. Sure hope this isn't another honeymoon period. It's the longest honeymoon period we've experienced! > > > > Rochelle > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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