Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008  , That's our story too. Our daughter, , died in 1993. During that grieving time, the Lord told me I would have another little girl, but she would have DS. Told the Lord, that's fine with me. One alive with DS is much more preferable to me than another in the grave. Martha was born 4 years later. Tina Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge. God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.) .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008  I always knew i would have a kid with a disability....when I was 26 my gyno was this little 'Dr. Ruth' type woman, accent and all...she wanted me to get pregnant and not wait too long...my answer 'I'M NOT MARRIED!" She had all of these arguments of how I would grow old alone, nobody would be there to take care of me (oh, this was the last time I saw her) and my response was, "What if my kid is disabled and unable to take care of me..and where's the guarantee that ANY kid will take care of me?" Wow, I didn't know how prophetic, but I do think that would be able to take care of me... THEN when I was pregnant I set the crib up around my 3rd month (I'm a lot type A) and I'm can visualize anything...I could never 'see' a baby in that crib. So when he was born then had an 'infection' (pneumonia from ingesting meconium) I thought for sure the reason I couldn't 'see' him was because he was going to die...so I didn't care about the DS I only cared that he lived! ANd in the few weeks before he was born Jim Henson had died of pneumonia so i thought if a big adult could die from it then a tiny baby could too! (I didn't know there were different types of pneumonia at the time) , Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html [DownSyndromeInfoEx change] Re: Down Syndrome Research To: DownSyndromeInfoExc hange@yahoogroup s.com Date: Monday, June 30, 2008, 12:30 PM Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned "taking a good quality fish oil that has been tested to be heavy metal free too" -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- "This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease." Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . . Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version: Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies. In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, "what-you-see- is-what-you- get. However, we believe, "With God, ALL things are possible!" God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly. 'nough said? Shani Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 OMG - that is so weird. I remember having a dream when I was pregnant with my son where everyone looked at my baby and cringed and acted like something was wrong and I kept looking at the baby and saying I didn't see anything wrong (as I recall the face was a blur) - another sign I think I was given that he would be born with Down syndrome. I always knew i would have a kid with a disability.. ..when I was 26 my gyno was this little 'Dr. Ruth' type woman, accent and all...she wanted me to get pregnant and not wait too long...my answer 'I'M NOT MARRIED! " She had all of these arguments of how I would grow old alone, nobody would be there to take care of me (oh, this was the last time I saw her) and my response was, " What if my kid is disabled and unable to take care of me..and where's the guarantee that ANY kid will take care of me? " Wow, I didn't know how prophetic, but I do think that would be able to take care of me... THEN when I was pregnant I set the crib up around my 3rd month (I'm a lot type A) and I'm can visualize anything...I could never 'see' a baby in that crib. So when he was born then had an 'infection' (pneumonia from ingesting meconium) I thought for sure the reason I couldn't 'see' him was because he was going to die...so I didn't care about the DS I only cared that he lived! ANd in the few weeks before he was born Jim Henson had died of pneumonia so i thought if a big adult could die from it then a tiny baby could too! (I didn't know there were different types of pneumonia at the time) , Mom to 14, DS, Southern California To succeed in life, you need three things: a wishbone, a backbone and a funny bone. ~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosis http://www.leeworks .net/DDS/What to Say to Parents of a Child with a Diagnosis http://www.leeworks .net/DDS/ speech.html [DownSyndromeInfoEx change] Re: Down Syndrome Research To: DownSyndromeInfoExc hange@yahoogroup s.com Date: Monday, June 30, 2008, 12:30 PM Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned " taking a good quality fish oil that has been tested to be heavy metal free too " -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- " This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease. " Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . . Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version: Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies. In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, " what-you-see- is-what-you- get. However, we believe, " With God, ALL things are possible! " God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly. 'nough said? Shani Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 OMG - that is so weird. I remember having a dream when I was pregnant with my son where everyone looked at my baby and cringed and acted like something was wrong and I kept looking at the baby and saying I didn't see anything wrong (as I recall the face was a blur) - another sign I think I was given that he would be born with Down syndrome. I always knew i would have a kid with a disability.. ..when I was 26 my gyno was this little 'Dr. Ruth' type woman, accent and all...she wanted me to get pregnant and not wait too long...my answer 'I'M NOT MARRIED! " She had all of these arguments of how I would grow old alone, nobody would be there to take care of me (oh, this was the last time I saw her) and my response was, " What if my kid is disabled and unable to take care of me..and where's the guarantee that ANY kid will take care of me? " Wow, I didn't know how prophetic, but I do think that would be able to take care of me... THEN when I was pregnant I set the crib up around my 3rd month (I'm a lot type A) and I'm can visualize anything...I could never 'see' a baby in that crib. So when he was born then had an 'infection' (pneumonia from ingesting meconium) I thought for sure the reason I couldn't 'see' him was because he was going to die...so I didn't care about the DS I only cared that he lived! ANd in the few weeks before he was born Jim Henson had died of pneumonia so i thought if a big adult could die from it then a tiny baby could too! (I didn't know there were different types of pneumonia at the time) , Mom to 14, DS, Southern California To succeed in life, you need three things: a wishbone, a backbone and a funny bone. ~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosis http://www.leeworks .net/DDS/What to Say to Parents of a Child with a Diagnosis http://www.leeworks .net/DDS/ speech.html [DownSyndromeInfoEx change] Re: Down Syndrome Research To: DownSyndromeInfoExc hange@yahoogroup s.com Date: Monday, June 30, 2008, 12:30 PM Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned " taking a good quality fish oil that has been tested to be heavy metal free too " -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- " This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease. " Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . . Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version: Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies. In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, " what-you-see- is-what-you- get. However, we believe, " With God, ALL things are possible! " God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly. 'nough said? Shani Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 I had a feeling that my baby would have a cleft lip/palate..had that feeling for a couple of my pregnancies, but none of my kids did. I have probably mentioned this before, but I remember before I got pregnant with Danny that I always had a feeling that one of my kids was missing when we were all in the same room..so I would count them;-) always got 6, so I knew they were all there, but it just felt like someone was missing. After Danny was born, I never had that feeling again. kathyR (we knew before Danny was born that he ‘probably’ had Ds, but I hoped it wasn’t true…we knew as soon as he opened his eyes, though, that he did. From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Tutwiler Sent: Monday, June 30, 2008 9:09 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Re: Down Syndrome Research OMG - that is so weird. I remember having a dream when I was pregnant with my son where everyone looked at my baby and cringed and acted like something was wrong and I kept looking at the baby and saying I didn't see anything wrong (as I recall the face was a blur) - another sign I think I was given that he would be born with Down syndrome.  I always knew i would have a kid with a disability.. ..when I was 26 my gyno was this little 'Dr. Ruth' type woman, accent and all...she wanted me to get pregnant and not wait too long...my answer 'I'M NOT MARRIED! " She had all of these arguments of how I would grow old alone, nobody would be there to take care of me (oh, this was the last time I saw her) and my response was, " What if my kid is disabled and unable to take care of me..and where's the guarantee that ANY kid will take care of me? " Wow, I didn't know how prophetic, but I do think that would be able to take care of me... THEN when I was pregnant I set the crib up around my 3rd month (I'm a lot type A) and I'm can visualize anything...I could never 'see' a baby in that crib. So when he was born then had an 'infection' (pneumonia from ingesting meconium) I thought for sure the reason I couldn't 'see' him was because he was going to die...so I didn't care about the DS I only cared that he lived! ANd in the few weeks before he was born Jim Henson had died of pneumonia so i thought if a big adult could die from it then a tiny baby could too! (I didn't know there were different types of pneumonia at the time) , Mom to 14, DS, Southern California To succeed in life, you need three things: a wishbone, a backbone and a funny bone. ~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosis http://www.leeworks ..net/DDS/ What to Say to Parents of a Child with a Diagnosis http://www.leeworks ..net/DDS/ speech.html ----- Original Message ----- From: Carlson To: DownSyndromeInfoExc hange@yahoogroup s.com Sent: Monday, June 30, 2008 4:05 PM Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome Research  Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge. God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.) ----- Original Message ----- From: Tutwiler To: DownSyndromeInfoExc hange@yahoogroup s.com Sent: Monday, June 30, 2008 6:57 PM Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome Research I also did not have the AFP test but early on had some spotting and had a conversation with God and told him it was okay if the baby had a disability he was still very loved and wanted ... and so it was. was born with Down syndrome! On Mon, Jun 30, 2008 at 1:36 PM, Carlson wrote: Same here... Ironically we declined testing with this pregnancy. But Either way when I was about 7 months along GOD told me one day at church. ( Long Story) .. When Sam was delivered the MW started asking " did you get the AFP test? " I cut her off and I told her.. " She has Downs Syndrome and its OK " . Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 I had a feeling that my baby would have a cleft lip/palate..had that feeling for a couple of my pregnancies, but none of my kids did. I have probably mentioned this before, but I remember before I got pregnant with Danny that I always had a feeling that one of my kids was missing when we were all in the same room..so I would count them;-) always got 6, so I knew they were all there, but it just felt like someone was missing. After Danny was born, I never had that feeling again. kathyR (we knew before Danny was born that he ‘probably’ had Ds, but I hoped it wasn’t true…we knew as soon as he opened his eyes, though, that he did. From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Tutwiler Sent: Monday, June 30, 2008 9:09 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Re: Down Syndrome Research OMG - that is so weird. I remember having a dream when I was pregnant with my son where everyone looked at my baby and cringed and acted like something was wrong and I kept looking at the baby and saying I didn't see anything wrong (as I recall the face was a blur) - another sign I think I was given that he would be born with Down syndrome.  I always knew i would have a kid with a disability.. ..when I was 26 my gyno was this little 'Dr. Ruth' type woman, accent and all...she wanted me to get pregnant and not wait too long...my answer 'I'M NOT MARRIED! " She had all of these arguments of how I would grow old alone, nobody would be there to take care of me (oh, this was the last time I saw her) and my response was, " What if my kid is disabled and unable to take care of me..and where's the guarantee that ANY kid will take care of me? " Wow, I didn't know how prophetic, but I do think that would be able to take care of me... THEN when I was pregnant I set the crib up around my 3rd month (I'm a lot type A) and I'm can visualize anything...I could never 'see' a baby in that crib. So when he was born then had an 'infection' (pneumonia from ingesting meconium) I thought for sure the reason I couldn't 'see' him was because he was going to die...so I didn't care about the DS I only cared that he lived! ANd in the few weeks before he was born Jim Henson had died of pneumonia so i thought if a big adult could die from it then a tiny baby could too! (I didn't know there were different types of pneumonia at the time) , Mom to 14, DS, Southern California To succeed in life, you need three things: a wishbone, a backbone and a funny bone. ~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosis http://www.leeworks ..net/DDS/ What to Say to Parents of a Child with a Diagnosis http://www.leeworks ..net/DDS/ speech.html ----- Original Message ----- From: Carlson To: DownSyndromeInfoExc hange@yahoogroup s.com Sent: Monday, June 30, 2008 4:05 PM Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome Research  Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge. God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.) ----- Original Message ----- From: Tutwiler To: DownSyndromeInfoExc hange@yahoogroup s.com Sent: Monday, June 30, 2008 6:57 PM Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome Research I also did not have the AFP test but early on had some spotting and had a conversation with God and told him it was okay if the baby had a disability he was still very loved and wanted ... and so it was. was born with Down syndrome! On Mon, Jun 30, 2008 at 1:36 PM, Carlson wrote: Same here... Ironically we declined testing with this pregnancy. But Either way when I was about 7 months along GOD told me one day at church. ( Long Story) .. When Sam was delivered the MW started asking " did you get the AFP test? " I cut her off and I told her.. " She has Downs Syndrome and its OK " . Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 I had a feeling that my baby would have a cleft lip/palate..had that feeling for a couple of my pregnancies, but none of my kids did. I have probably mentioned this before, but I remember before I got pregnant with Danny that I always had a feeling that one of my kids was missing when we were all in the same room..so I would count them;-) always got 6, so I knew they were all there, but it just felt like someone was missing. After Danny was born, I never had that feeling again. kathyR (we knew before Danny was born that he ‘probably’ had Ds, but I hoped it wasn’t true…we knew as soon as he opened his eyes, though, that he did. From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Tutwiler Sent: Monday, June 30, 2008 9:09 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Re: Down Syndrome Research OMG - that is so weird. I remember having a dream when I was pregnant with my son where everyone looked at my baby and cringed and acted like something was wrong and I kept looking at the baby and saying I didn't see anything wrong (as I recall the face was a blur) - another sign I think I was given that he would be born with Down syndrome.  I always knew i would have a kid with a disability.. ..when I was 26 my gyno was this little 'Dr. Ruth' type woman, accent and all...she wanted me to get pregnant and not wait too long...my answer 'I'M NOT MARRIED! " She had all of these arguments of how I would grow old alone, nobody would be there to take care of me (oh, this was the last time I saw her) and my response was, " What if my kid is disabled and unable to take care of me..and where's the guarantee that ANY kid will take care of me? " Wow, I didn't know how prophetic, but I do think that would be able to take care of me... THEN when I was pregnant I set the crib up around my 3rd month (I'm a lot type A) and I'm can visualize anything...I could never 'see' a baby in that crib. So when he was born then had an 'infection' (pneumonia from ingesting meconium) I thought for sure the reason I couldn't 'see' him was because he was going to die...so I didn't care about the DS I only cared that he lived! ANd in the few weeks before he was born Jim Henson had died of pneumonia so i thought if a big adult could die from it then a tiny baby could too! (I didn't know there were different types of pneumonia at the time) , Mom to 14, DS, Southern California To succeed in life, you need three things: a wishbone, a backbone and a funny bone. ~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosis http://www.leeworks ..net/DDS/ What to Say to Parents of a Child with a Diagnosis http://www.leeworks ..net/DDS/ speech.html ----- Original Message ----- From: Carlson To: DownSyndromeInfoExc hange@yahoogroup s.com Sent: Monday, June 30, 2008 4:05 PM Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome Research  Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge. God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.) ----- Original Message ----- From: Tutwiler To: DownSyndromeInfoExc hange@yahoogroup s.com Sent: Monday, June 30, 2008 6:57 PM Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome Research I also did not have the AFP test but early on had some spotting and had a conversation with God and told him it was okay if the baby had a disability he was still very loved and wanted ... and so it was. was born with Down syndrome! On Mon, Jun 30, 2008 at 1:36 PM, Carlson wrote: Same here... Ironically we declined testing with this pregnancy. But Either way when I was about 7 months along GOD told me one day at church. ( Long Story) .. When Sam was delivered the MW started asking " did you get the AFP test? " I cut her off and I told her.. " She has Downs Syndrome and its OK " . Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 My husband always said he thought he would have a child with Down Syndrome. He has a cousin with DS. He said he always had that feeling. He did not share that with me til Amber was born. He said he thought his first born would be . Maybe some do . Carol P From: Roquemores <dtroquemore@ gmail.com>Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome ResearchTo: DownSyndromeInfoExc hange@yahoogroup s.comDate: Monday, June 30, 2008, 7:31 PM  , That's our story too. Our daughter, , died in 1993. During that grieving time, the Lord told me I would have another little girl, but she would have DS. Told the Lord, that's fine with me. One alive with DS is much more preferable to me than another in the grave. Martha was born 4 years later. Tina  Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge. God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.) .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 I'm not Carol, but can speak to this. GABA receptors are throughout the body. Once they start working correctly, as in Martha's case, then the gut started working correctly...receptors there too. Inhibit the Inhibitory and you have a body that starts to work much better. GABA receptors are the issue.....ginkgo biloba is an answer. Tina Carol, I'm lost. . Could you explain a little bit about how tone is a brain issue? And wouldn't there need to be a physical change in the muscle cells, or the number of them, to improve muscle tone? Thanks, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 I hope you find more that’ll help Evan’s tone so he can walk still. What you listed is what I would’ve suggested, but hopefully others will have something to add in. We don’t use the Body Bio stuff as of right now. My brother (he’s just 3 ½) just gets the Nordic Naturals ProDHA. Qadoshyah From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Priscilla Sent: Tuesday, July 01, 2008 1:12 PM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Down Syndrome Research I've just done a teeny bit of internet research on muscle tone since I was looking for ways to improve Evan's. Here are a few excerpts which might help: " Muscle tone vs. muscle strength The low muscle tone associated with hypotonia must not be confused with low muscle strength. In body building, good muscle tone is equated with good physical condition, with taut muscles, and a lean appearance, whereas an out-of-shape, overweight individual with fleshy muscles is said to have " poor tone. " Neurologically, however, muscle tone cannot be changed under voluntary control, regardless of exercise and diet. " In an article by Diane E Gagnon, M.Ed., PT,[3] she explains " True muscle tone is the inherent ability of the muscle to respond to a stretch. For example, if you quickly straighten the flexed elbow of an unsuspecting child with normal tone, the biceps will quickly contract in response (automatic protection against possible injury). When the perceived danger has passed, which the brain figures out really quickly once the stimulus is removed, the muscle then relaxes, and returns to its normal resting state. " ...The child with low tone has muscles that are slow to initiate a muscle contraction, contract very slowly in response to a stimulus, and cannot maintain a contraction for as long as his 'normal' peers. Because these low-toned muscles do not fully contract before they again relax (muscle accommodates to the stimulus and so shuts down again), they remain loose and very stretchy, never realising their full potential of maintaining a muscle contraction over time. " _______________ Diagnosis " A diagnosis of hypotonia (low muscle tone) is sometimes considered a form of muscular dystrophy or cerebral palsy, depending on the symptoms and the doctor. If the cause of the hypotonia is thought to lie in the brain, then it might be classified as a cerebral palsy. If the cause seems to be in the muscles, it might be classified as a muscular dystrophy, even though most forms of hypotonia are not seriously dystrophic. If the cause is thought to be in the nerves, it could be classified as either or neither. In any case, hypotonia is rarely an actual muscular dystrophy or cerebral palsy, and is often not classified as either one, or anything at all for that matter. " [4] So . . . from all this I'm guessing if you help the brain you probably will help muscle tone. I'll just throw this interesting abstract into the mix too: " EJ729212 - Children with Down Syndrome Improved in Motor Functioning and Muscle Tone Following Massage Therapy Abstract: Twenty-one moderate to high functioning young children (mean age, two years) with Down syndrome receiving early intervention (physical therapy, occupational therapy and speech therapy) were randomly assigned to additionally receive two 0.5-hour massage therapy or reading sessions (control group) per week for two months. On the first and last day of the study, the childrens functioning levels were assessed using the Developmental Programming for Infants and Young Children scale, and muscle tone was assessed using a new preliminary scale (the Arms, Legs and Trunk Muscle Tone Score). Children in the massage therapy group revealed greater gains in fine and gross motor functioning and less severe limb hypotonicity when compared with the children in the reading/control group. These findings suggest that the addition of massage therapy to an early intervention program may enhance motor functioning and increase muscle tone for children with Down syndrome. (Contains 3 tables.) " http://64.233.167.104/search?q=cache:Dv3unmilB48J:eric.ed.gov/ERICWebPortal/recordDetail%3Faccno%3DEJ729212+%22increase+muscle+tone%22+legs & hl=en & gl=us & strip=1 I'm kinda desperately trying to keep Evan walking --his walking is very very shaky right now and they had always told me kids with spina bifida often quit walking when they get older and gain more weight on those weak legs. The low tone of DS is not helping any. Anyone with suggestions? I'd love to hear them. We are presently trying a partial weight-bearing Kaye walker and are starting some exercises to strengthen hips and legs and are taking some joint supplements. We are seeing two physical therapists --one from rehab. Also I am experimenting with the ginkgold. Evan always stimmed badly on piracetam, choline, folinic, etc. and sure enough when I gave him 2 tablets (60 mgs. each) he stimmed terribly--just like on the piracetam --hands and legs couldn't sit still. However I am finding that if I space it out and give one in the morning and one at night we are okay and it doesn't SEEM to be disturbing sleep. I'm thinking about trying to give him one every 8 hours to up the dose to 180 mgs. a day and see what happens. He weighs 75 lbs. Anyone have any comments on that? Are any giving it at night? Also I was looking into the body bio stuff and wow!!! Couldn't believe how expensive! I think it was about $200 for a month's supply of just the body bio balance and body bio PC. I know there are cheaper alternatives out there but they may not be as good. Are some of you using them and where do you get them? I've been using just an omega 3 gelcap and DHA but I'd kinda like to know all my options. I'm also using curcumin. Priscilla K >>>>>>>> Posted by: " Kris Delaney " If the gingko is working as the new drug will, then Martha's tone should be improving which would improve her body's ability to digest food. Tone is not a physical issue, it's a brain issue, so the new treatments would improve a lot more than just cognition- it should improve gross and fine motor, articulation, joint and even breathing caused by floppy airways. It's SO EXCITING!!! Finally real help. Carol, I'm lost. . Could you explain a little bit about how tone is a brain issue? And wouldn't there need to be a physical change in the muscle cells, or the number of them, to improve muscle tone? Thanks, Kris>>>>>>>>>>>>>>>>>>>>>>>>>> Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including Evan, 11, born with Down Syndrome and Spina Bifida " My strength is made perfect in weakness. " " My grace is sufficient. " II Corinthians 12:9 KJV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Steph, I feel God began preparing me when I was a child... my mother worked at a school for children with physical and mental handicaps... some had DS, but I wouldn't say they were very high functioning... I remember them as generally sweet natured, rather stocky, and stubborn as mules on occasion. The summer I was 13, I got to help as a junior counselor for a week of "special camp" that my mother directed. The youngest camper was a tow headed 7 yr. old boy with DS named Chris. I got to be his "Mom" for the week as he needed one-on-one help with everything. "Mom" was the only word he could speak, and that is what he called me, and he stole my heart. As my own family grew and grew over the years, and I continued to have babies long after most of my peers had completed their families, I never worried that I would have a baby with DS or any other disability. I was a "pro" at pregnancy and childbirth; our 4th baby was born at home, and every one thereafter we delivered at home by ourselves. I was almost 40 when our 8th child was born at home, and I declined testing like I had for all the others and never gave DS a thought. But when I was pregnant with our 9th, at 44, I did think about DS. As a family, we were studying how God often uses trials for his glory, and I just felt that He was preparing us for some kind of trial in the near future. I thought maybe this baby would have DS or some other disability. I mentioned it to my husband, to my oldest daughters, to a close friend, and to my mother. My husband asked me to stop talking about it... like he thought if I kept talking about it, it might come true. Then, his mother became seriously ill, and 3 weeks before our baby was due, she died. I thought I must have been mistaken about the baby, because his mother's illness and death was the trial that God had been preparing us for. I had a nurse/midwife for prenatal care, and when I was just one week from due, she was concerned that I had almost no amniotic fluid. She thought that the placenta was shutting down, and the baby might not be getting enough nourishment. She said we needed to get that baby born. I agreed to try the castor oil method. It worked, and was born at home, 6 days early, and no problems with labor or delivery. He was a dark ruddy color, but I thought that was just unique to him. It did seem that he was a little hard to pick up, but I thought I'd just forgotten what it was like to handle a newborn. He wouldn't latch on and nurse, but I thought he was just tired from birth and would eat when he got hungry. I didn't know the markers for DS in a newborn. He looked like all the others, to me, except for his ruddy coloring. We didn't see much of his eyes, as he just wanted to sleep. As the hours passed, he still wouldn't nurse. I tried sugar water, but he wouldn't take any. And he hadn't pooped or peed. We called the ped who said to bring him in right away. I thought we were going to find out that he was dehydrated and too weak to eat, and they were going to want to put him in the hospital so they could get him hydrated. Instead, the ped called his coloring "dusky", said he had a huge heart murmur, and sent him promptly by ambulance to an excellent facility with a top notch neonatal intensive care unit. That our baby would have a congenital heart defect was totally unexpected, yet I felt such peace that he was safe in God's hands. As we tried to understand and absorb all the details of his particular CHD, they mentioned they were doing a blood test for DS, and we asked what made them think he might have DS. But I then I thought, "I knew it all along!" And I knew it wouldn't be a big deal, because we would just love on him all the more to fill whatever he might lack. (one and only wife to Fred; mom to Kari, Melody, Faith, Heidi, Isaac, Josiah, , Alana, and ! Yes, they're all ours!) Is. 40:31 "They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles, they shall run and not be weary, they shall walk and not faint." From: Shani <shani2usbcglobal (DOT) net> Subject: [DownSyndromeInfoEx change] Re: Down Syndrome Research To: DownSyndromeInfoExc hange@yahoogroup s.com Date: Monday, June 30, 2008, 12:30 PM Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned "taking a good quality fish oil that has been tested to be heavy metal free too" -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- "This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease." Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . .. he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . . Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version: Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies. In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, "what-you-see- is-what-you- get. However, we believe, "With God, ALL things are possible!" God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly. 'nough said? Shani Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 Shani, Thank you for sharing your story with us. I was touched by your faithfulness. I will be praying for you in the days to come. Stacey > > Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned " taking a good quality fish oil that has been tested to be heavy metal free too " -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- " This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease. " Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good > idea . . . > > Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge.org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version: > > Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter's Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies. > > In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties - - an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, " what-you-see-is-what-you-get. However, we believe, " With God, ALL things are possible! " God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have > accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly. > > 'nough said? > Shani > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 Shani, Thank you for sharing your story with us. I was touched by your faithfulness. I will be praying for you in the days to come. Stacey > > Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned " taking a good quality fish oil that has been tested to be heavy metal free too " -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- " This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease. " Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good > idea . . . > > Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge.org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version: > > Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter's Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies. > > In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties - - an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, " what-you-see-is-what-you-get. However, we believe, " With God, ALL things are possible! " God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have > accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly. > > 'nough said? > Shani > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 hi tina, thanks so much for the info on martha's supplements. why is she on atenolol? correct me if i'm wrong but isnt this for high cholesterol? i ask because my mom takes this and am concerned for bea because she had one blood test that said she had high values on her lipid profile but the ped said to disregard. was wondering if I should dig deeper? I would also like to know what effects made you decide that martha did not need NVD? (i think from a later post) thanks again best, angie mendoza mom to bea 8 Carol, We had a Mom Spa weekend at 's and discussed the science behind what is going on. Mobley has been put on the shelf, and Garner is the guy to watch. Also Fernandez did a great paper, I'll attach it here and hope it comes through. If not, give a holler and I'll send it. With the PTZ, they were using massive amounts on humans....which is the mistake they usually do. The old " if a little works, then a lot will work better " garbage. But it's still there, just like piracetam is still out there. The mice had NO seizures when it was used *correctly*. With prozac, even Dr. L was prescribing it for gut issues. Low dosage. So while he's having a fit with 's protocol, there isn't much he hasn't prescribed for our kids. Heck, it wasn't that long ago, he was again ginkgo!! My how times have changed. Again, it's a low dosage, unlike what they send out the " fear alerts " , where it's up around 40-50mg and goodness knows what else they are taking. That's usually the case, and not just prozac by itself. It's the GABA receptors that are in overdrive, and ginkgo " slows them down " . As says, our bodies need to be in balance, especially our kids. Well, it's the inhibitory that has to be inhibited, not the excitatory. It took a bit, but the explanation, once it hit me(!), made such incredible sense. There are GABA receptors throughout the body and the GB " balances " them out and the body works the way it should. Yes, it's the bilobalide that works. And there is no one who is extracting it. Hopefully once the see this research, someone will see the money(!) in it and take it on. There are patents filed for this process. As for what Martha is taking....prozac, GB, focalin, PC, DHA, CLO, BodyBio balance, optizinc, TMG, methyl B12, L-glutathione, levoxyl, atenolol. I think that's all. The biggest thing of all that's happening is her deductive reasoning. Her speech is coming, but they said it would be the last thing to emerge. But she's also self correcting constantly. I thought I would have all my life to stay a step ahead of her. I was doing good. NOW....I'm having to put myself in 2nd gear stay a step ahead, and even that is not working at times!!! 3rd gear here I come. Again, hope the paper comes through, but if not, holler. Tina Quote Link to comment Share on other sites More sharing options...
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