Re: Mother of Down Syndrome Child is McCain's chosen one!

August 29, 2008

I just saw that Palin is McCain's choice! She just had a Down Syndrome child earlier this year and she's the Govenor of Alaska. I couldn't help but be a big mouth to this site, since I'm the mom to three Down Syndrome kids!

Joyce

wife to Mike 33 wonderful years

mom to seven

-32, Leah-31, Mikey-27, -DS-25, -22, -15-DS, and -11-DS/Autism

To: Multiples-DS From: igercak@...Date: Wed, 20 Aug 2008 18:01:50 -0400Subject: Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of fun. I hope you

will find the answers to all you questions, here and in the future.

Irene

ZackDS/ADHD, , & 10

Jake 12

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will be happy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung's disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy spider song, dog and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy and rubbing his brothers back.We look forward to checking this message board often. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost 2 years). www.tommyupdate.blogspot.com

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August 29, 2008

Very interesting! I don’t know

anything about Gov. Palin so I just googled her. The story that came up

first about her being chosen for VP had a brief bio about her including that

she has a child who “suffers from Down’s syndrome.” Hopefully

that isn’t the tone/language they use when talking about her family

during the campaign! I’m sure we’ll be learning lots more

about her in the coming months…

Eileen

Mom to Owen-6, Maeve-4, Colin (Ds) and

-9mos

From:

Multiples-DS [mailto:Multiples-DS ] On Behalf Of Joyce Fledderjohann

Sent: Friday, August 29, 2008

12:08 PM

To: multiples-ds

Subject: RE: Mother

of Down Syndrome Child is McCain's chosen one!

I just saw that Palin is McCain's choice! She just had a Down

Syndrome child earlier this year and she's the Govenor of Alaska. I

couldn't help but be a big mouth to this site, since I'm the mom to three Down

Syndrome kids!

Joyce

wife to Mike 33 wonderful years

mom to seven

-32, Leah-31, Mikey-27, -DS-25,

-22, -15-DS,

and -11-DS/Autism

To: Multiples-DS

From: igercakcfl (DOT) rr.com

Date: Wed, 20 Aug 2008 18:01:50 -0400

Subject: Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of

fun. I hope you

will find the answers to all you questions, here and in the

future.

Irene

ZackDS/ADHD, , & 10

Jake 12

Introduction

Hello to everyone. We have enjoyed reading all the

posts this last

year and have found the group extremely informative.

We have 20 month old boy twins (ds) and Liam. Tommy will be

happy to tell you that he is 12 minuts older than Liam. Tommy also

has Hirschsprung's disease (he had 5 inches of his colon removed and

reconnected thru what is termed a pull thru surgery). Tommy had an

NG tube for his first 10 months of life and now has a Gtube. He

uses sign lanugage to communicate, can sign more, eat, itsy bitsy

spider song, dog and happy. He is one of four of our children and

continues to be our inspiration and joy. Liam is a healthy little

toddler and LOVES his brother, many times walking over to Tommy and

rubbing his brothers back.

We look forward to checking this message board often. Our current

questions are: does anyone use daycare with their kiddos that have

ds? does anyone else have gtubes? kinda curious about granulation

tissue issues with that.

Lots of love to everyone, Sandi McMillan (wife to Colin, momma to

Hannah 14, 13, (Ds and HD pull thru) and Liam (almost

2 years). www.tommyupdate.blogspot.com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

August 30, 2008

I may be going out on a limb here, but I remember when she gave birth. I thought they hid the fact the first couple of days that the baby was born with DS. I hope this is a good thing for all our kids and they are portrayed as the wonderful gifts that they are.wife to mom to Amy 20, Kelsey 18, Davey (DS) 8 and Will 8 Very interesting! I don’t know anything about Gov. Palin so I just googled her. The story that came up first about her being chosen for VP had a brief bio about her including that she has a child who “suffers from Down’s syndrome.” Hopefully that isn’t the tone/language they use when talking about her family during the campaign! I’m sure we’ll be learning lots more about her in the coming months… EileenMom to Owen-6, Maeve-4, Colin (Ds) and -9mos From: Multiples-DS [mailto:Multiples-DS ]On Behalf Of Joyce FledderjohannSent: Friday, August 29, 2008 12:08 PMTo: multiples-ds Subject: RE: Mother of Down Syndrome Child is McCain's chosen one! I just saw that Palin is McCain's choice! She just had a Down Syndrome child earlier this year and she's the Govenor of Alaska. I couldn't help but be a big mouth to this site, since I'm the mom to three Down Syndrome kids! Joycewife to Mike 33 wonderful yearsmom to seven-32, Leah-31, Mikey-27, -DS-25, -22, -15-DS, and -11-DS/AutismTo: Multiples-DS From: igercakcfl (DOT) rr.comDate: Wed, 20 Aug 2008 18:01:50 -0400Subject: Re: IntroductionHello Sandi,Sounds like a busy house. 20 months is alot of fun. I hope youwill find the answers to all you questions, here and in the future.IreneZackDS/ADHD, , & 10Jake 12 Introduction Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung's disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy spider song, dog and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board often. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate.blogspot.com Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

August 30, 2008

I'm sure you can find all kinds of things said that may or may not be true. From what I read about Palin is that she found out early in her pregnancy that Trig was going to have down syndrome and still wanted her son to be born. The article said that her husband was out of town when she first found out she was going to have a baby with ds, so she waited to tell her husband first before telling anyone else, this was when she was still pregnant. A lot of women on this group shared a lot of different emotions and fears, including me, when our babies with ds were born. My was born 28yrs. ago so it was really a different time then than it is now. Even with all the fears I had of what the future for would be, I loved

him with all my heart and soul from the beginning. I didn't know he had ds until after he was born. Judy & Bob Parents to 28yrs. the joy of our lives who happens to have ds and multiple disabilities and

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy spider song, dog and

happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board often. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot.

com

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August 30, 2008

is so lucky you are his mom. Times have became so much easier for our children. We are all so blessed.I'm sure you can find all kinds of things said that may or may not be true. From what I read about Palin is that she found out early in her pregnancy that Trig was going to have down syndrome and still wanted her son to be born. The article said that her husband was out of town when she first found out she was going to have a baby with ds, so she waited to tell her husband first before telling anyone else, this was when she was still pregnant. A lot of women on this group shared a lot of different emotions and fears, including me, when our babies with ds were born. My was born 28yrs. ago so it was really a different time then than it is now. Even with all the fears I had of what the future for would be, I loved him with all my heart and soul from the beginning. I didn't know he had ds until after he was born. Judy & Bob Parents to 28yrs. the joy of our lives who happens to have ds and multiple disabilities and Introduction Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy spider song, dog and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board often. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot. com Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

August 30, 2008

Hi Joyce,

I saw that Gov. Palin was the choice too. Excellent. If nothing else it brings special needs children to the front. When was the last time we saw someone in politics with their Down's child. The only other politian I know of is one of the congressman from Texas... hope she does well for all of us...

Sandy Weber ,

mom to Way too Many! Including Triplets!

WAHF Talk Radio Host www.wahftalkradio.com

Belly Buster Diet, Inc. www.bellybusterdiet.com"We didn't invent dieting....we just made it FUN!"

Weight Start 326/Current 219/Goal 155

August 31, 2008

I can totally relate to keeping it to yourself at first. having DS was a total shock to us when he was born (being told he did not have it during the pregnancy, thats a whole other story) He was born 11/9. We told my parents when he was 1 day old, my sister the next. We did not tell his siblings until the day before Thanksgiving. (They were dealing with preemie twins and it did not matter, he was their brother, end of story) We told other family members over the course of the first 2 weeks of his life. We needed to deal with it and have it be ours before we shared it with everyone else. I don't think waiting to tell means anything other than that.

a

mom to Meg14,Jack11,Lucy7,(DS) and 33 months

Re: Mother of Down Syndrome Child is McCain's chosen one!

I'm sure you can find all kinds of things said that may or may not be true. From what I read about Sara

h Palin is that she found out early in her pregnancy that Trig was going to have down syndrome and still wanted her son to be born. The article said that her husband was out of town when she first found out she was going to have a baby with ds, so she waited to tell her husband first before telling anyone else, this was when she was still pregnant. A lot of women on this group shared a lot of different emotions and fears, including me, when our babies with ds were born. My was born 28yrs. ago so it was really a different time then than it is now. Even with all the fears I had of what the future for would be, I loved him with all my heart and soul from the beginning. I didn't know he had ds until after he was born. Judy & Bob Parents to 28yrs. the joy of our lives who happens to have ds and multiple disabilities and

Introduction

Hello to everyone. We have enjoyed reading all the posts this last

year and have found the group extremely informative.

We have 20 month old boy twins (ds) and Liam. Tommy will be

happy to tell you that he is 12 minuts older than Liam. Tommy also

has Hirschsprung' s disease (he had 5 inches of his colon removed and

reconnected thru what is termed a pull thru surgery). Tommy had an

NG tube for his first 10 months of life and now has a Gtube. He

uses sign lanugage to communicate, can sign more, eat, itsy bitsy

spider song, dog and happy. He is one of four of our children and

continues to be our inspiration and joy. Liam is a healthy little

toddler and LOVES his brother, many times walking over to Tommy and

rubbing his brothers back.

We look forward to checking this message board ofte

n. Our current

questions are: does anyone use daycare with their kiddos that have

ds? does anyone else have gtubes? kinda curious about granulation

tissue issues with that.

Lots of love to everyone, Sandi McMillan (wife to Colin, momma to

Hannah 14, 13, (Ds and HD pull thru) and Liam (almost

2 years). www.tommyupdate. blogspot. com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

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August 31, 2008

I too was told no ds or spina bifida (sp?) while pregnant and having been tested.

, mom to Nicala & ,ds/adhd/autism (11), (9), & (2)

Very interesting! I don’t know anything about Gov. Palin so I just googled her. The story that came up first about her being chosen for VP had a brief bio about her including that she has a child who “suffers from Down’s syndrome.” Hopefully that isn’t the tone/language they use when talking about her family during the campa ign! I’m sure we’ll be learning lots more about her in the coming months…

Eileen

Mom to Owen-6, Maeve-4, Colin (Ds) and -9mos

From: Multiples-DS@ yahoogroups. com [mailto:Multiples- DSyahoogroups (DOT) com]On Behalf Of Joyce FledderjohannSent: Friday, August 29, 2008 12:08 PMTo: multiples-ds@ yahoogroups. comSubject: RE: Mother of Down Syndrome Child is McCain's chosen one!

I just saw that Palin is McCain's choice! She just had a Down Syndrome child earlier this year and she's the Govenor of Alaska. I couldn't help but be a big mouth to this site, since I'm the mom to three Down Syndrome kids! Joycewife to Mike 33 wonderful yearsmom to seven-32, Leah-31, Mikey-27, -DS- 25, -22, -15-DS, and -11- DS/Autism

To: Multiples-DS@ yahoogroups. comFrom: igercakcfl (DOT) rr.comDate: Wed, 20 Aug 2008 18:01:50 -0400Subject: Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of fun. I hope you

will find the answers to all you questions, here and in the future.

Irene

ZackDS/ADHD, , & 10

Jake 12

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy spider song, dog

and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board ofte n. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot. com

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August 31, 2008

I found out early in my pregnancy that

Gavin had DS. I didn’t tell people, not for shame, but because I

didn’t want their opinion or pity. The nursery nurses argued that

he didn’t have DS after he was born. People have told me he doesn’t

have “the look” and I am never offended or flattered. I see other

kids with DS and they look and feel like family. I think the features of

DS… the sparkly eyes, the crinkles in the corners of the eyes that look

like smile lines, the shorter or flatter nose bridge, and the softness of the

facial features that are ageless are so beautiful. If I were going to

imagine angels or some totally peaceful being they would have these features.

It is my hope that any person in the

position to affect changes in education, medical insurance, and adult

services/employment will remember to count people with Down syndrome in.

Suze (mom to Nicolas and Kristopher

identical/15/Opitz and Gavin 7/DS)

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September 1, 2008

Hi ,

Can I ask you if/ how long you were angry with your Doctor? We would totally have had regardless but we spent 26 weeks of the pregnancy saying how glad we were that he did not have DS. I feel like we cursed him every time we said anything like that and then we had to grieve for the baby we thought he was going to be while accepting the baby he was, (him and his preemie twin). I work with my MFM Doctor and when I read his ultrasound reports, I wonder if those patients have the same false security we had and I am still angry with him 33 months later. (Never was I angry or unhappy with though, please don't misunderstand, I think I just need someone to blame)

a

mom to Meg14,Jack11,Lucy7,(DS)and 33 months

Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of fun. I hope you

will find the answers to all you questions, here and in the future.

Irene

ZackDS/ADHD, , & 10

Jake 12

Introduction

Hello to everyone. We have enjoyed reading all the posts this last

year and have found the group extremely informative.

We have 20 month old boy twins (ds) and Liam. Tommy will be

happy to tell you that he is 12 minuts older than Liam. Tommy also

has Hirschsprung' s disease (he had 5 inches of his colon removed and

reconnected thru what is termed a pull thru surgery). Tommy had an

NG tube for his first 10 months of life and now has a Gtube. He

uses sign lanugage to communicate, can sign more, eat, itsy bitsy

sp

ider song, dog and happy. He is one of four of our children and

continues to be our inspiration and joy. Liam is a healthy little

toddler and LOVES his brother, many times walking over to Tommy and

rubbing his brothers back.

We look forward to checking this message board ofte n. Our current

questions are: does anyone use daycare with their kiddos that have

ds? does anyone else have gtubes? kinda curious about granulation

tissue issues with that.

Lots of love to everyone, Sandi McMillan (wife to Colin, momma to

Hannah 14, 13, (Ds and HD pull thru) and Liam (almost

2 years). www.tommyupdate. blogspot. com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

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September 1, 2008

Could I ask what tests you had that gave you the diagnosis of no Down Syndrome or no spina bifida? Did you have amniocentesis with erroneous karyotyping? Or CVS? Just wondering. Joyce , cerfitied nurse-midwife and grandmother to Vaughan's , , Will (DS) and Jake

Very interesting! I don’t know anything about Gov. Palin so I just googled her. The story that came up first about her being chosen for VP had a brief bio about her including that she has a child who “suffers from Down’s syndrome.” Hopefully that isn’t the tone/language they use when talking about her family during the campa ign! I’m sure we’ll be learning lots more about her in the coming months…

Eileen

Mom to Owen-6, Maeve-4, Colin (Ds) and -9mos

From: Multiples-DS@ yahoogroups. com [mailto:Multiples- DSyahoogroups (DOT) com]On Behalf Of Joyce FledderjohannSent: Friday, August 29, 2008 12:08 PMTo: multiples-ds@ yahoogroups. comSubject: RE: Mother of Down Syndrome Child is McCain's chosen one!

I just saw that Palin is McCain's choice! She just had a Down Syndrome child earlier this year and she's the Govenor of Alaska. I couldn't help but be a big mouth to this site, since I'm the mom to three Down Syndrome kids! Joycewife to Mike 33 wonderful yearsmom to seven-32, Leah-31, Mikey-27, -DS- 25, -22, -15-DS, and -11- DS/Autism

To: Multiples-DS@ yahoogroups. comFrom: igercakcfl (DOT) rr.comDate: Wed, 20 Aug 2008 18:01:50 -0400Subject: Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of fun. I hope you

will find the answers to all you questions, here and in the future.

Irene

ZackDS/ADHD, , & 10

Jake 12

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy sp ider song, dog

and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board ofte n. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot. com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

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September 1, 2008

Hi Joyce,

We had an elevated Quad screen but were told this, 'with one fetus, if the results is one in 200, that is the risk, when you have twins we cut it in half making your risk 1 in 100. It is not an exact science with multiples.' Then after the high risk ultrasound we were told there were no markers for DS, and this further reduced the risk to 1 in 250 which was the same for my age. Also that he had clubbed feet and this is not associated with any syndromes, and we were told this again every 4 weeks at every ultrasound. (My 'risk' was 1 in 197) We opted to no have an amnio due to the risk to not one but two potentially 'normal' healthy babies, especially since we would have had him regardless. I realize this was not a formal yes or no test but he had us convinced that it was not even a possibility.

a

mom to MEg14,Jack11,Lucy7,(DS) and 33 months

Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of fun. I hope you

will find the answers to all you questions, here and in the future.

Irene

ZackDS/ADHD, , & 10

Jake 12

Introduction

Hello to everyone. We have enjoyed reading all the posts this last

year and have found the group extremely informative.

We have 20 month old boy twins (ds) and Liam. Tommy will be

happy to tell you that he is 12 minuts older than Liam. Tommy also

has Hirschsprung' s disease (he had 5 inches of his colon removed and

reconnected thru what is termed a pull thru surgery). Tommy had an

NG tube for his first 10 months of life and now has a Gtube. He

uses sign lanugage to communicate, can sign more, eat, itsy bitsy

sp ider song, dog and happy. He is one of four of our children and

continues to be our inspiration and joy. Liam is a healthy little

toddler and LOVES his brother, many times walking over to Tommy and

rubbing his brothers back.

We look forward to checking this message board ofte n. Our current

questions are: does anyone use daycare with their kiddos that have

ds? does anyone else have gtubes? kinda curious about granulation

tissue issues with that.

Lots of love to everyone, Sandi McMillan (wife to Colin, momma to

Hannah 14, 13, (Ds and HD pull thru) and Liam (almost

2 years). www.tommyupdate. blogspot. com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

September 1, 2008

I had 4 U Sounds as a 40 year old mom. None of them showed anything except for shorter than average femurs and Humerous bones, but they were still within the normal ranges. Nevertheless, i felt like something was wrong for most of my pregnancy, When i saw Meghan I knew immediately that she had Ds. I never blamed anyone except me, because of my age...

Hugs, Kris

Please click the picture to visit Meghan's blog, Kara and 's are linked to hers.

Very interesting! I don’t know anything about Gov. Palin so I just googled her. The story that came up first about her being chosen for VP had a brief bio about her including that she has a child who “suffers from Down’s syndrome.” Hopefully that isn’t the tone/language they use when talking about her family during the campa ign! I’m sure we’ll be learning lots more about her in the coming months…

Eileen

Mom to Owen-6, Maeve-4, Colin (Ds) and -9mos

From: Multiples-DS@ yahoogroups. com [mailto:Multiples- DSyahoogroups (DOT) com]On Behalf Of Joyce FledderjohannSent: Friday, August 29, 2008 12:08 PMTo: multiples-ds@ yahoogroups. comSubject: RE: Mother of Down Syndrome Child is McCain's chosen one!

I just saw that Palin is McCain's choice! She just had a Down Syndrome child earlier this year and she's the Govenor of Alaska. I couldn't help but be a big mouth to this site, since I'm the mom to three Down Syndrome kids! Joycewife to Mike 33 wonderful yearsmom to seven-32, Leah-31, Mikey-27, -DS- 25, -22, -15-DS, and -11- DS/Autism

To: Multiples-DS@ yahoogroups. comFrom: igercakcfl (DOT) rr.comDate: Wed, 20 Aug 2008 18:01:50 -0400Subject: Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of fun. I hope you

will find the answers to all you questions, here and in the future.

Irene

ZackDS/ADHD, , & 10

Jake 12

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy sp ider song, dog

and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board ofte n. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot. com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

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September 2, 2008

Joyce & a, this is going back nearly 12 years now but what I had done was called a " triple marker blood screening" at the time. I was told that if any levels were elevated that the next step would be a amniocentesis. When the nurse from the Dr's office called me her exact words to me were "no down syndrome and no spina bifida." Later (after the diagnosis) I found out that because I was having twins the results couldn't be accurate and that their results reported to me were based on my age alone (I was 22 at the time). I was furious and still am with the way the medical field handled this situation and many more to come. No one knew that had ds when he was born, and we never suspected it b/c we were told he didn't have it. We didn't find out until two weeks after he had been

born that he had ds. BEHIND OUR BACKS a NICU (they were born at 27 weeks) nurse called in the geneticist to have looked at (the reason being b/c he has webbed feet), the geneticist looked at both babies and recommended that neither be tested as they did not display the "typical" characteristics of down syndrome. Apparently staff went against the geneticists recommendations (which is in her report) and tested anyway. We we not told the results until everyone in the NICU knew but us, we were also told that we "will be lucky if he can dress himself." This was a couple of days before x-mas. There was mass confusion as to if he was tested properly as the geneticist did not recommend that the testing be done and knew nothing of it. Anyhow, he ended up being tested for a second time and we were on pins and needles (hoping there had been a mistake) for the week or so it took for the results (wasn't a

nice x-mas). Obviously the results were ds for a second time (he was later tested again for mosacism but that was negative). There was no way I was going through that hell again, so I had amniocentesis for my two other pregnancies following that one & would do it again.

Very interesting! I don’t know anything about Gov. Palin so I just googled her. The story that came up first about her being chosen for VP had a brief bio about her including that she has a child who “suffers from Down’s syndrome.” Hopefully that isn’t the tone/language they use when talking about her family during the campa ign! I’m sure we’ll be learning lots more about her in the coming months…

Eileen

Mom to Owen-6, Maeve-4, Colin (Ds) and -9mos

From: Multiples-DS@ yahoogroups. com [mailto:Multiples- DSyahoogroups (DOT) com]On Behalf Of Joyce FledderjohannSent: Friday, August 29, 2008 12:08 PMTo: multiples-ds@ yahoogroups. comSubject: RE: Mother of Down Syndrome Child is McCain's chosen one!

I just saw that Palin is McCain's choice! She just had a Down Syndrome child earlier this year and she's the Govenor of Alaska. I couldn't help but be a big mouth to this site, since I'm the mom to three Down Syndrome kids! Joycewife to Mike 33 wonderful yearsmom to seven-32, Leah-31, Mikey-27, -DS- 25, -22, -15-DS, and -11- DS/Autism

To: Multiples-DS@ yahoogroups. comFrom: igercakcfl (DOT) rr.comDate: Wed, 20 Aug 2008 18:01:50 -0400Subject: Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of fun. I hope you

will find the answers to all you questions, here and in the future.

Irene

ZackDS/ADHD, , & 10

Jake 12

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy sp ider song, dog

and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board ofte n. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot. com

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September 2, 2008

,

That is awful! The Quad screen used to be the triple screen of AFP, they have changed it some but apparently they still don't have an accurate test for multiple since we were told the same thing. I work at the hospital where the twins were born, in Labor and Delivery in fact. Everyone on the unit that evening knew about 's suspected DS before I even left the delivery room, before we were told also. That I have almost gotten over but being made to feel that there was nothing to worry about and to have it all come crashing down on us at a time that should have been one of the happiest days of our lives, that I cannot get over. I don't know if you can take comfort in or if it will anger you more to know that not much has changed in the medical community in regards to Down Syndrome and all that goes along with that diagnosis.

a

mom to Meg14,Jack11,Lucy7,(DS) & 33 months

Re: Introduction

Hello Sandi,

Sounds like a busy house. 20 months is alot of fun. I hope you

will find the answers to all you questions, here and in the future.

Irene

ZackDS/ADHD, , & 10

Jake 12

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