Re: I am new here

[Guest guest]

Welcome ! Many of our members have fraternal twins where one has DS.

Where in TX are you located? I'm in the Dallas/Fort Worth area. I hope this

group will be a source of support for you.

Judi-mom to Sam & , 14, Identical twins

>

> 1. What is your name? Minne

> 2. What are the first names of your children and how old are they? Estella

> Blue is 3. I am pregnant with fraternal twin girls, due in about 2 weeks.

> 3. Which child/children has Down syndrome? One of my unborn twin girls has

> been diagnosed with DS, while the other is unaffected.

> 4. Which state or country do you live in? Texas, USA

> 5. Anything else you want to tell us? My DS twin has duodenal atresia and

> will require surgery as soon as she is born. She also has Dandy

> Variant (which requires no intervention). I would love to hear from anybody

> who has dealt with these issues. Thanks!

>

[Guest guest]

Thank you, and Judi, for connecting with me! It is nice to know that there

are other parents in my boat. The feedback about the duodenal atresia is

helpful, and I will certainly plan to pump and freeze in hopes of avoiding the

" formula battle " that is involved in finding the perfect formula for a sensitive

tummy.

Any feedback about how to cope with my newborn's upcoming surgery and what I

should expect in having one healthy twin and one with DS would be awesome. I

appreciate the support here.

> >

> > 1. What is your name? Minne

> > 2. What are the first names of your children and how old are they? Estella

> > Blue is 3. I am pregnant with fraternal twin girls, due in about 2 weeks.

> > 3. Which child/children has Down syndrome? One of my unborn twin girls has

> > been diagnosed with DS, while the other is unaffected.

> > 4. Which state or country do you live in? Texas, USA

> > 5. Anything else you want to tell us? My DS twin has duodenal atresia and

> > will require surgery as soon as she is born. She also has Dandy

> > Variant (which requires no intervention). I would love to hear from anybody

> > who has dealt with these issues. Thanks!

> >

>

[Guest guest]

Hi ,

Can you share about some of the issues (good and bad) that you have faced in

having one twin with DS and one that is unaffected? Thanks so much for your

response!

>

> > 1. What is your name? Minne

> > 2. What are the first names of your children and how old are they?

> > Estella Blue is 3. I am pregnant with fraternal twin girls, due in

> > about 2 weeks.

> > 3. Which child/children has Down syndrome? One of my unborn twin

> > girls has been diagnosed with DS, while the other is unaffected.

> > 4. Which state or country do you live in? Texas, USA

> > 5. Anything else you want to tell us? My DS twin has duodenal

> > atresia and will require surgery as soon as she is born. She also

> > has Dandy Variant (which requires no intervention). I would

> > love to hear from anybody who has dealt with these issues. Thanks!

> >

> >

>

[Guest guest]

Welcome . My twins are 6 and Adrienne had a duodenal atresia. The surgery went fine. She had a tube feeding that they put past the site of the surgery, so she was able to have breast milk fairly soon after surgery. She has not had any problems from the surgery, and had her appendix out with the surgery, too so no worries about that in the future. She will actually heal really quickly from the surgery (much faster than an adult) My girls were 7 weeks early so both spent a few weeks in the NICU. Adrienne was only at the hospital a few days longer than Kayley. If you want to breastfeed, I suggest you get a Medela double pump and start pumping right away to establish your milk supply. The more you pump or nurse, the more you will make. Adrienne did nurse, but had some suck/swallow issues which was causing her not to gain weight fast enough. I had to pump and feed exclusively for her, and nursed and pumped for Kayley. I always pumped after each time I fed them, so I was always ahead of them in the supply. I actually had a full freezer full of frozen milk that ended up lasting until they were 15 months old. If your little one has a problem sucking and swallowing, I would take them right away to a speech feeding clinic BUT don't let them have you thicken the breast milk and feed her through a large hole nipple. This will teach her to swallow incorrectly and will cause speech problems down the road, which I am dealing with now. If there is any place you can go to get started on the Talk Tools therapy with Rosenfeld , I would go to them for feeding help too. Just passing on some things that I learned along the way. It will seem overwhelming, but so worth it. My girls are doing just great in kindergarten. Adrienne is reading phonetically and making steady progress every day. You will learn so much and meet so many people you never would have met without your little one with DS.Good luck and wishing you a good delivery!Cyndy

Welcome! So glad you found us.Congratulations on your pregnancy. You are almost there! My boys were born at 37 weeks.We live in Northern California. We have 4 children. Amy is 23 and just graduated from college. Kelsey is 20 and still in college. Davey and Will are 10 and in the 5th grade. Davey has DS. Although Davey did not have heart issues, other parents have experience with what to expect. Please ask any and all questions. Remember, the next few weeks are going to be crazy wonderful. Take all the help that is offered to you.We love pictures (hint, hint). Love life and be gentle, 1. What is your name? Minne2. What are the first names of your children and how old are they? Estella Blue is 3. I am pregnant with fraternal twin girls, due in about 2 weeks. 3. Which child/children has Down syndrome? One of my unborn twin girls has been diagnosed with DS, while the other is unaffected. 4. Which state or country do you live in? Texas, USA5. Anything else you want to tell us? My DS twin has duodenal atresia and will require surgery as soon as she is born. She also has Dandy Variant (which requires no intervention). I would love to hear from anybody who has dealt with these issues. Thanks!

[Guest guest]

Cyndy -- Can you share what programs/methods you use/have used to help teach your little one how to read phonetically? My guys are in kindergarten and I don't believe the teachers are teaching them anything. I need to refocus their academic/DTT programs to emphasize letters/phonics etc. What do you recommend? They can site read a bunch of movie names (silver writing on silver disc format, NOT based on a picture) b/c they're interested in that. But in K, they're teaching them site words like "at" which means absolutely nothing to them. Suggestions welcome. Best Regards, Maggie

www.walkonthehappyside.wordpress.com

To: "Multiples-DS " <Multiples-DS >Sent: Mon, January 3, 2011 7:01:26 PMSubject: Re: I am new here

Welcome . My twins are 6 and Adrienne had a duodenal atresia. The surgery went fine. She had a tube feeding that they put past the site of the surgery, so she was able to have breast milk fairly soon after surgery. She has not had any problems from the surgery, and had her appendix out with the surgery, too so no worries about that in the future. She will actually heal really quickly from the surgery (much faster than an adult) My girls were 7 weeks early so both spent a few weeks in the NICU. Adrienne was only at the hospital a few days longer than Kayley. If you want to breastfeed, I suggest you get a Medela double pump and start pumping right away to establish your milk supply. The more you pump or nurse, the more you will make. Adrienne did nurse, but had some suck/swallow issues which was causing her not to gain weight fast enough. I had to pump and feed exclusively for her,

and nursed and pumped for Kayley. I always pumped after each time I fed them, so I was always ahead of them in the supply. I actually had a full freezer full of frozen milk that ended up lasting until they were 15 months old.

If your little one has a problem sucking and swallowing, I would take them right away to a speech feeding clinic BUT don't let them have you thicken the breast milk and feed her through a large hole nipple. This will teach her to swallow incorrectly and will cause speech problems down the road, which I am dealing with now. If there is any place you can go to get started on the Talk Tools therapy with Rosenfeld , I would go to them for feeding help too.

Just passing on some things that I learned along the way. It will seem overwhelming, but so worth it. My girls are doing just great in kindergarten. Adrienne is reading phonetically and making steady progress every day. You will learn so much and meet so many people you never would have met without your little one with DS.

Good luck and wishing you a good delivery!Cyndy

Welcome! So glad you found us.

Congratulations on your pregnancy. You are almost there! My boys were born at 37 weeks.

We live in Northern California. We have 4 children. Amy is 23 and just graduated from college. Kelsey is 20 and still in college. Davey and Will are 10 and in the 5th grade. Davey has DS. Although Davey did not have heart issues, other parents have experience with what to expect. Please ask any and all questions.

Remember, the next few weeks are going to be crazy wonderful. Take all the help that is offered to you.

We love pictures (hint, hint).

Love life and be gentle,

1. What is your name? Minne2. What are the first names of your children and how old are they? Estella Blue is 3. I am pregnant with fraternal twin girls, due in about 2 weeks. 3. Which child/children has Down syndrome? One of my unborn twin girls has been diagnosed with DS, while the other is unaffected. 4. Which state or country do you live in? Texas, USA5. Anything else you want to tell us? My DS twin has duodenal atresia and will require

surgery as soon as she is born. She also has Dandy Variant (which requires no intervention). I would love to hear from anybody who has dealt with these issues. Thanks!

[Guest guest]

Hi Maggie,I had started with sight reading when Adrienne was about 3, so we had a little bit of a head start. For those sight words, called Dolch words, I found a nice set of books from Scholastic called "high frequency readers". I made flash cards of the words and did those with her- not too many, start with one to three at a time and add as you go. It doesn't matter if they repeat the words back to you at first, they will eventually. Just go through them quickly, about a second per card, and do it three times a day. They will start to read the high frequency books before you know it. They have colorful pictures and are pretty cute.As far as phonics, I have been pleasantly surprised that our school is using Tucker Signing. You can find it on Amazon. It is basically a system that has a hand sign or signal for each sound. The book comes with a instructional DVD and a manual with pictures. The kids use their left hand to make the sign for each sound, starting slowly and then faster while they learn to blend. It is similar to Cued Speech which has been found to be helpful for kids with Down Syndrome, but Tucker Sign is a little simplified.Starfall is also a website with a lot of phonics on it if they like to play on the computer.These things have helped us, along with lots of extra work at home. Good luck! I just about jumped out of my skin when she sounded out the word "mat". It's so exciting to see our kids do things after working so hard.Cyndy

Cyndy -- Can you share what programs/methods you use/have used to help teach your little one how to read phonetically? My guys are in kindergarten and I don't believe the teachers are teaching them anything. I need to refocus their academic/DTT programs to emphasize letters/phonics etc. What do you recommend? They can site read a bunch of movie names (silver writing on silver disc format, NOT based on a picture) b/c they're interested in that. But in K, they're teaching them site words like "at" which means absolutely nothing to them. Suggestions welcome. Best Regards, Maggie

www.walkonthehappyside.wordpress.com

To: "Multiples-DS " <Multiples-DS >Sent: Mon, January 3, 2011 7:01:26 PMSubject: Re: I am new here

Welcome . My twins are 6 and Adrienne had a duodenal atresia. The surgery went fine. She had a tube feeding that they put past the site of the surgery, so she was able to have breast milk fairly soon after surgery. She has not had any problems from the surgery, and had her appendix out with the surgery, too so no worries about that in the future. She will actually heal really quickly from the surgery (much faster than an adult) My girls were 7 weeks early so both spent a few weeks in the NICU. Adrienne was only at the hospital a few days longer than Kayley. If you want to breastfeed, I suggest you get a Medela double pump and start pumping right away to establish your milk supply. The more you pump or nurse, the more you will make. Adrienne did nurse, but had some suck/swallow issues which was causing her not to gain weight fast enough. I had to pump and feed exclusively for her,

and nursed and pumped for Kayley. I always pumped after each time I fed them, so I was always ahead of them in the supply. I actually had a full freezer full of frozen milk that ended up lasting until they were 15 months old.

If your little one has a problem sucking and swallowing, I would take them right away to a speech feeding clinic BUT don't let them have you thicken the breast milk and feed her through a large hole nipple. This will teach her to swallow incorrectly and will cause speech problems down the road, which I am dealing with now. If there is any place you can go to get started on the Talk Tools therapy with Rosenfeld , I would go to them for feeding help too.

Just passing on some things that I learned along the way. It will seem overwhelming, but so worth it. My girls are doing just great in kindergarten. Adrienne is reading phonetically and making steady progress every day. You will learn so much and meet so many people you never would have met without your little one with DS.

Good luck and wishing you a good delivery!Cyndy

Welcome! So glad you found us.

Congratulations on your pregnancy. You are almost there! My boys were born at 37 weeks.

We live in Northern California. We have 4 children. Amy is 23 and just graduated from college. Kelsey is 20 and still in college. Davey and Will are 10 and in the 5th grade. Davey has DS. Although Davey did not have heart issues, other parents have experience with what to expect. Please ask any and all questions.

Remember, the next few weeks are going to be crazy wonderful. Take all the help that is offered to you.

We love pictures (hint, hint).

Love life and be gentle,

1. What is your name? Minne2. What are the first names of your children and how old are they? Estella Blue is 3. I am pregnant with fraternal twin girls, due in about 2 weeks. 3. Which child/children has Down syndrome? One of my unborn twin girls has been diagnosed with DS, while the other is unaffected. 4. Which state or country do you live in? Texas, USA5. Anything else you want to tell us? My DS twin has duodenal atresia and will require

surgery as soon as she is born. She also has Dandy Variant (which requires no intervention). I would love to hear from anybody who has dealt with these issues. Thanks!

[Guest guest]

Dolch words have been used with Davey too.It is a great program. Love life and be gentle, Hi Maggie,I had started with sight reading when Adrienne was about 3, so we had a little bit of a head start. For those sight words, called Dolch words, I found a nice set of books from Scholastic called "high frequency readers". I made flash cards of the words and did those with her- not too many, start with one to three at a time and add as you go. It doesn't matter if they repeat the words back to you at first, they will eventually. Just go through them quickly, about a second per card, and do it three times a day. They will start to read the high frequency books before you know it. They have colorful pictures and are pretty cute.As far as phonics, I have been pleasantly surprised that our school is using Tucker Signing. You can find it on Amazon. It is basically a system that has a hand sign or signal for each sound. The book comes with a instructional DVD and a manual with pictures. The kids use their left hand to make the sign for each sound, starting slowly and then faster while they learn to blend. It is similar to Cued Speech which has been found to be helpful for kids with Down Syndrome, but Tucker Sign is a little simplified.Starfall is also a website with a lot of phonics on it if they like to play on the computer.These things have helped us, along with lots of extra work at home. Good luck! I just about jumped out of my skin when she sounded out the word "mat". It's so exciting to see our kids do things after working so hard.Cyndy Cyndy -- Can you share what programs/methods you use/have used to help teach your little one how to read phonetically? My guys are in kindergarten and I don't believe the teachers are teaching them anything. I need to refocus their academic/DTT programs to emphasize letters/phonics etc. What do you recommend? They can site read a bunch of movie names (silver writing on silver disc format, NOT based on a picture) b/c they're interested in that. But in K, they're teaching them site words like "at" which means absolutely nothing to them. Suggestions welcome. Best Regards, Maggiewww.walkonthehappyside.wordpress.comTo: "Multiples-DS " <Multiples-DS >Sent: Mon, January 3, 2011 7:01:26 PMSubject: Re: I am new here Welcome . My twins are 6 and Adrienne had a duodenal atresia. The surgery went fine. She had a tube feeding that they put past the site of the surgery, so she was able to have breast milk fairly soon after surgery. She has not had any problems from the surgery, and had her appendix out with the surgery, too so no worries about that in the future. She will actually heal really quickly from the surgery (much faster than an adult) My girls were 7 weeks early so both spent a few weeks in the NICU. Adrienne was only at the hospital a few days longer than Kayley. If you want to breastfeed, I suggest you get a Medela double pump and start pumping right away to establish your milk supply. The more you pump or nurse, the more you will make. Adrienne did nurse, but had some suck/swallow issues which was causing her not to gain weight fast enough. I had to pump and feed exclusively for her, and nursed and pumped for Kayley. I always pumped after each time I fed them, so I was always ahead of them in the supply. I actually had a full freezer full of frozen milk that ended up lasting until they were 15 months old. If your little one has a problem sucking and swallowing, I would take them right away to a speech feeding clinic BUT don't let them have you thicken the breast milk and feed her through a large hole nipple. This will teach her to swallow incorrectly and will cause speech problems down the road, which I am dealing with now. If there is any place you can go to get started on the Talk Tools therapy with Rosenfeld , I would go to them for feeding help too. Just passing on some things that I learned along the way. It will seem overwhelming, but so worth it. My girls are doing just great in kindergarten. Adrienne is reading phonetically and making steady progress every day. You will learn so much and meet so many people you never would have met without your little one with DS.Good luck and wishing you a good delivery!Cyndy Welcome! So glad you found us.Congratulations on your pregnancy. You are almost there! My boys were born at 37 weeks.We live in Northern California. We have 4 children. Amy is 23 and just graduated from college. Kelsey is 20 and still in college. Davey and Will are 10 and in the 5th grade. Davey has DS. Although Davey did not have heart issues, other parents have experience with what to expect. Please ask any and all questions. Remember, the next few weeks are going to be crazy wonderful. Take all the help that is offered to you.We love pictures (hint, hint).Love life and be gentle,1. What is your name? Minne2. What are the first names of your children and how old are they? Estella Blue is 3. I am pregnant with fraternal twin girls, due in about 2 weeks. 3. Which child/children has Down syndrome? One of my unborn twin girls has been diagnosed with DS, while the other is unaffected. 4. Which state or country do you live in? Texas, USA5. Anything else you want to tell us? My DS twin has duodenal atresia and will require surgery as soon as she is born. She also has Dandy Variant (which requires no intervention). I would love to hear from anybody who has dealt with these issues. Thanks!