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Post by brocksmommy on Apr 17, 2006 16:44:11 GMT -5
hi i just wanted to introduce myself and my son Brock. I've reading all your story's but have had a chance to say hi. i have 2 kids, Savannah who is almost 2yrs(handful) and Brock 11weeks old. he has DS. this has been hard mainly because he was 9 1/2 weeks when we got the conformation from the chrome... Dr. we keep praying that there was some mistake. but there is not. but I'm truly glad to have him. since the triple screen test we knew that it was a possibility (DS) there were a few times that we thought we were going to loose him. the first week of Jan. i was in a major auto accident. 4 days before i had my son i went to Dr. i thought my water broke. she said no it didn't and sent me home. then i had a pre scheduled apt. with a specialist. they rushed me in for an emergency induction. very low fluid. i thank god every day for my son because he was almost not.
i could really use some help. how do i know if i have a good doctor for my son? what should i be on the look out for? i don't know much so any and all info. , direction, suggestions are welcomed
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Post by Alice on Apr 17, 2006 17:00:58 GMT -5
Welcome! I am glad you have found this site! You will get as much info as you ask!
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Post by Many on Apr 17, 2006 18:53:07 GMT -5
Hi!! This is a really great web site for support or just for anything really. You might want to read "Babies with Down Syndrome". I don't know who the author is, but you can do a search on Amazon.com. I don't know where you live, but if there is a Down Sydrome clinic you might want to take your baby there. They really have lots of info to tell you and guide you. Please ask anything if you have any questions and I'm sure some of the unomas members here will try their best to help you. Congratulations on your baby boy!!! Welcome to Unomas!!!
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Post by Emilysmom on Apr 17, 2006 19:05:31 GMT -5
WELCOME TO UNO MAS!! Congratulations on the birth of your son Brock!!
Many has some good suggestions.............if there is a Down syndrome clinic near you, that would be a great place to find a doc who understands babies with Down syndrome. You can check out the section here at Uno Mas at the home page that provides links. There is a link for a site by Dr. Len Leshin. He is a pediatrician, and also has a son with Down syndrome. There are lots of good articles on his site!
The book "Babies with Down syndrome, A New Parent's Guide" is very good! The author is Karen Stray-Gunderson. You can also go to the Woodbine House publishers website. There are lots of great books about Down syndrome that you can order from them.
Have you contacted the Early Intervention Services in your area? They were very helpful to us!!!
Please let us know if there is any way we can help. I'm looking forward to learning more about your little guy!
Susan
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Post by andrewsmom on Apr 17, 2006 19:28:31 GMT -5
Hi and welcome to Uno Mas!!! Congratulations on your new little one! I think you got excellent advice from everyone so far. I agree....post any questions you have and I'm sure you will get good advice here. I look forward to hearing more about you and your family.
-Trisha
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Post by brocksmommy on Apr 17, 2006 20:37:59 GMT -5
thanks everyone, i live in shreveport,LA. how would i find a clinic here?
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Post by Emilysmom on Apr 17, 2006 20:52:32 GMT -5
Oh, you are in luck!!!! We have two awesome Uno Mas members in Shreveport!!! They can probably help you a lot to find good services.
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Post by CC on Apr 17, 2006 20:57:02 GMT -5
and WELCOME TO UNO CC from New Jersey ~
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Post by willsdad on Apr 17, 2006 22:15:01 GMT -5
brocksmom, Check out this website: www.upwithdowns.com It is the home page for the local Down syndrome support group in S'port. You can click the links on the side of the page for contact information. There are many great families involved, and they will be glad to show you where you can get more information as well as where to get EI services in the area. Up With Downs is an active group, so you will be well taken care of. I'm not too far away in Arkansas, so my family has had some involvement with the group as well. Welcome to Uno Mas!
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Post by Pat on Apr 18, 2006 6:57:11 GMT -5
Welcome. ;D To answer one of your questions. How do I know if I have a good Dr? My family Dr said he wanted John-John to have a ped because there could be some medical issues. He did have a small hole in his heart, that closed on it's own, but other than that there are none. The first practice I took John-John to there attitude was he WAS DS, who's name happened to be John. If that's the attitude you get, or an attitude of he'll never amount to anything, RUN. Don't be afraid to change Dr if that is a problem. He's your child & you're the one who knows best for Brock! Every child is an individual just like Savannah & Brock. I have a great ped now The clinic is a great idea. I went to one & got all kinds of medical info for myself & the Dr. It was well worth it! Pat
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Post by wrblack on Apr 18, 2006 11:13:35 GMT -5
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Post by ValerieC on Apr 18, 2006 11:30:43 GMT -5
Congratulations on the birth of your son. How wonderful you have a boy and girl, a "rich man's family". I, on the other hand, have 2 boys and 2 girls and we call it the "poor man's family"!
Welcome to Unomas where you'll find a wealth of information from people who know intimately about the subject of Down syndrome.
All the advice you've gotten so far, I agree wholeheartedly with.
Let me give you my experience with our Pediatrician. Our youngest was 10 days old when we got the call confirming her diagnosis. Our peditrician immediately gave me doctors' offices to call and set up appointments for various issues as well as the name and number of a woman who has a daughter with Ds in their practice that I could call for support. To me that was going above and beyond the call of duty to make sure I had a support system set up and going.
Whenever I call with a question, our doctors take my concerns very seriously. When we go for well visits they have the health guide located at Dr. Leshin's site in Alethea's file that they follow to the TEE. That's how I know I have a good doctor for our little one.
Early Intervention is a very important step to take!!!
Valerie C
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Post by firerose98 on Apr 18, 2006 13:03:25 GMT -5
Welcome, welcome! You have a joined a very privileged group, being a parent of a child with DS. It is a privileged group...sometimes trying, but always privileged. You take joy in things that other parents take for granted. When Gillian was diagnosed with DS, something we didn't even expect before she was born, it hit me very, very hard. Thankfully the test came back quickly, so we only had to wait about 1-2 weeks (don't quite remember now). The hardest thing for us was dealing with her heart condition. She had multiple holes in her heart. Thankfully she had a great cardiac team, was followed by an awesome specialist, and soared through open heart surgery at 5 months old. She is now almost 18 months old. When finding a good pediatrician, make sure to ask how many other DS kids they have in their practice. Educate yourself first. Access any community resources you can find like Infant Intervention with an occupational therapist and developmental nurses and stuff. Gillian loves her educator, Betty. She gets so excited when Betty starts coming up the front walk. Just remember that above all you have a gift from God. That little boy will be the absolute light of your life. Yeah, things will be tough sometimes, but nothing is better than when they smile at you and give you a big hug. You know when Gillian is giving you a real hug because she pats your shoulder. Ok, well, sorry to ramble. Welcome again. Michelle
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Post by Jenn on Apr 18, 2006 13:29:14 GMT -5
Hi....Unfortunately there are no clinics here....but we have many good doctors. We use Dr. Parker at Portico Pediatrics. He has many little ones in his practice with ds and is awesome! Another that is good is Dr. Mack. I am sure somebody else can chime up and add some more. Several doctors at Portico Pediatrics would be good though. Pistoriuos, Vaughn are two that I like....but I really like Parker. Welcome to this group....Email or pm me anytime...
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Post by chasesmom on Apr 18, 2006 17:40:20 GMT -5
Hi, congratulations on your new son Brock, I love his name!! My son is 13 now and we also didnt know until after he was born that he had DS. What a shock. I am glad he is doing well after all the both of you went thru with that accident, eekk! there is lots and lots of people here if you need any help, just ask. Again, congratulations! Robin
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