Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 Hi Sandi, Welcome to the group. Sounds like you have a wonderful family. I do not have any experience with the GI issues, but can tell you a little about day care. We have in the past had people come to our home for child care. We also used our local respite program as much as we could. Right now, we are very blessed to be participating in an Au Pair program. We have a lovely girl from Slovakia that lives with our family. She is such a great help with the boys. I am looking forward to learning more about your family. wife to mom to Amy 20, Kelsey 18, Davey (DS) 8 and Will 8 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2008 Report Share Posted August 20, 2008 , my surviving twin is not in daycare, but does go to the MRDD preschool. I put a split gauze under his Mic-Key button and do a crisscross tape over that to help secure it so it won't get pulled.......BUT he likes to pull his dressing off. He has really been doing this a lot more the last year. We only get some granulation tissue....and only small amounts....when he pulls his tube too much. I still try to secure it......it helps keep the traction off the site thus decrease granulation.....but as I said, he is pulling it off. The only way to keep his dressing on is to have a onesie on him....if he can't unsnap that and get to it...sigh! He is 5 1/2 yrs old...so onesies are getting much harder to find in his size. If starts to get even a bit red at his stoma, I start using Bactroban and it goes away. Since is almost 2, onesies should be great for him for a couple more years. I hope this helps a little.  Deanna, mom to Alyssa, 14 , 12 Jarod, 8 (DS) 5 ~i~Jordan (DS) 1/20/03-2/2/03 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 Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2008 Report Share Posted August 21, 2008 Hi Deanna - I have onesie extensions that I bought and never used if you want them. Just email me privately where to send them. Mom to Haley & Nikki, 5 twin girls both w/DS, and , 4 yr son Deannalee0524@... wrote: > > , my surviving twin is not in daycare, but does go to the MRDD > preschool. I put a split gauze under his Mic-Key button and do a > crisscross tape over that to help secure it so it won't get > pulled.......BUT he likes to pull his dressing off. He has really been > doing this a lot more the last year. We only get some granulation > tissue....and only small amounts....when he pulls his tube too much. I > still try to secure it......it helps keep the traction off the site > thus decrease granulation.....but as I said, he is pulling it off. The > only way to keep his dressing on is to have a onesie on him....if he > can't unsnap that and get to it...sigh! He is 5 1/2 yrs old...so > onesies are getting much harder to find in his size. If starts > to get even a bit red at his stoma, I start using Bactroban and it > goes away. > > > Since is almost 2, onesies should be great for him for a couple > more years. I hope this helps a little. > > <http://presence.webmail.aol.com/IM/?sn=deannalee0524 & locale=en-us & pd=0> Deanna, > mom to > Alyssa, 14 > , 12 > Jarod, 8 > (DS) 5 > ~i~Jordan (DS) 1/20/03-2/2/03 > > > 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 <http://www.tommyupdate>.blogspot.com > > ------------------------------------------------------------------------ > Get the MapQuest Toolbar > <http://mapquest.com/toolbar?ncid=mpqmap00050000000010>. Directions, > Traffic, Gas Prices More! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2008 Report Share Posted August 21, 2008 Hi Sandi, I’ve used a combination of RX medicine that really works. You could always try putting more water in the balloon. never really had problems with his g-tube, but did for some reason. I had to keep 10 ml of water in his balloon all the time; that’s the max you could put in. Kenalog 0.1% Cream Nystatin Cream Cecilia, mom to & 3.5 (DS) and 2 From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of sledding62 Sent: Wednesday, August 20, 2008 1:11 PM To: Multiples-DS Subject: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Welcome! We live in Reno and have four children. Amy is 21, Kelsey is 19. Both girls are going to college. Davey(DS) and Will are 9. I have been pat of the group sonde the boys were little. Love life and be gentle,Sent from my iPhone My name is and my husband's name is . (I use to belong to this group a few years ago.) We have 2 kids with DS. who's 15 and Isaiah who's almost 13. By the way, he also happens to have autism. Obviously their not twins, but by looking at them you sure would think so. Everyone always asks if they are. We live in the beautiful state of AZ where we're presently under our 6th day of a heat advisory (115 degrees). Thank God for swimming pools and AC. Something that makes our family special is that my kids have two cousins with DS. That makes a total of four kids with DS in our family. Coincidence? I don't think so, but the doctors still seem to think so. They also have three cousins with Treacher syndrome. But that's a whole other story. Anyway, I'm glad to be back. Avena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 welcome back to the group. your family seems like the perfect genetic study? I had an older brother with ds and then a son with ds and i thought that was interesting to. hope to hear more about your family soon. irene & paul FL jake 13 adhd, zachary ds/adhd, nicholas & rachel 11 introduction My name is and my husband's name is . (I use to belong to this group a few years ago.) We have 2 kids with DS. who's 15 and Isaiah who's almost 13. By the way, he also happens to have autism. Obviously their not twins, but by looking at them you sure would think so. Everyone always asks if they are. We live in the beautiful state of AZ where we're presently under our 6th day of a heat advisory (115 degrees). Thank God for swimming pools and AC. Something that makes our family special is that my kids have two cousins with DS. That makes a total of four kids with DS in our family. Coincidence? I don't think so, but the doctors still seem to think so. They also have three cousins with Treacher syndrome. But that's a whole other story. Anyway, I'm glad to be back. Avena __________ Information from ESET NOD32 Antivirus, version of virus signature database 4255 (20090717) __________The message was checked by ESET NOD32 Antivirus.http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Welcome Back . best, maggie Mom to Olivia ('01) and & ('05 - IDs w/ DS) www.walkonthehappyside.blogspot.com To: Multiples-DS Sent: Friday, July 17, 2009 11:09:29 AMSubject: introduction My name is and my husband's name is . (I use to belong to this group a few years ago.) We have 2 kids with DS. who's 15 and Isaiah who's almost 13. By the way, he also happens to have autism. Obviously their not twins, but by looking at them you sure would think so. Everyone always asks if they are. We live in the beautiful state of AZ where we're presently under our 6th day of a heat advisory (115 degrees). Thank God for swimming pools and AC. Something that makes our family special is that my kids have two cousins with DS. That makes a total of four kids with DS in our family. Coincidence? I don't think so, but the doctors still seem to think so. They also have three cousins with Treacher syndrome. But that's a whole other story. Anyway, I'm glad to be back. Avena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Welcome Cathleent!Bethesda, MD is my old stomping grounds. We are military, so we've moved around a lot and live in Kentucky now. I have 4 yr old boys, Ray & Sam(Ds) and they keep us busy. Enjoy your pregnancy! Sherry Hi, I thought I'd post a small introduction. My name is Cathleen, I live in Bethesda MD with my husband Seth and our 22 month old son Ronan. I'm expecting twins in May, a little girl and a little boy who has DS. We are very excited to be expanding our family. Quote Link to comment Share on other sites More sharing options...
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