RE: Down Syndrome Research

June 30, 2008

ï»¿

,

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.)

..

June 30, 2008

ï»¿

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

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.ï»¿ 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

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.ï»¿ 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

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 â€˜probablyâ€™ had Ds, but I hoped

it wasnâ€™t trueâ€¦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.

ï»¿

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

ï»¿

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

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 â€˜probablyâ€™ had Ds, but I hoped

it wasnâ€™t trueâ€¦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.

ï»¿

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

ï»¿

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

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 â€˜probablyâ€™ had Ds, but I hoped

it wasnâ€™t trueâ€¦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.

ï»¿

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

ï»¿

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

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

ï»¿

,

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

ï»¿ 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.)

..

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

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

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

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

>

July 3, 2008