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Post by TriciaF on Jan 9, 2006 9:52:10 GMT -5
There's not much additional conference info on the NDSC site as yet...so I called. Here's what I heard: marriott.com/property/propertypage/atlmq?WT_Ref=mi_leftThey have blocked 450 rooms at the hotel, all are either 2 beds or a King (no suites) for $109 per nite for the dates July 19th through July 24. So, thats a great rate for that hotel with dates outside the actual conference in case people want to come earlier and do things. But, I'm sure that the nightly rate will go up with taxes, etc. Then, parking is usually $22 per day and they have a group rate of $14 per day. The conference amount is not yet set....but will be in the neighborhood of $85 for a member, $150 for a couple. There is a sibling program for ages 12 and up for about $75. There is a family dance on Friday night. On Saturday night there is an adult banquet for $37 per adult. I didn't ask, but am pretty sure there is no childcare. But, if we get a group going, either here or from SC, we may be able to find some sitters among us. I don't know if I will go alone or with the family or what...but I am plannig to go. The NDSC membership is $25 for a family and you receive 7 newsletters a year. There will be addtional info on the conference in these and if you are a member, you will automatically receive the conference registration packet. I asked about whether the MARTA (Transport) station is in the hotel or not....it is in an adjacent shopping area, maybe several blocks long...but all covered skywalk. Evidently the new aquarium is a huge, big deal....the largest in the world. www.georgiaaquarium.org/Also, if my family goes, Connor and I will have to hit the big coasters at six flags. There is a huge new one to open this year. Looks like some great group discount tickets are available, including a free second day. Also, there is a Fairfield by Marriott with an indoor pool located just 3 miles from six flags with reg. room rates of just $79 and free parking. So, I'm thinking maybe 2 nights there and then 2 nights downtown. Although, there is a shuttle from downtown to six flags that is not very pricey. Lots of options. www.sixflags.com/parks/overgeorgia/index.aspJackie..... you are the pro on NDSC conferences....jump in here and give us your wisdom .
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Post by TriciaF on Jan 9, 2006 6:53:54 GMT -5
It's official!!!!! Who's going? I haven't made reservations...but this is the one I have been waiting for.
"As your child grows and changes, so do your family's needs. Don't miss a chance to learn and share at our annual "family reunion". Next year's NDSC convention will be the only national DS convention in the USA and Atlanta is within a short 2 hour flight of 80% of America's population. Make your plans now to attend!
For just $109 per night for a regular room, we'll be staying at the stunning Marriott Marquis. This architectural masterpiece is known for its soaring 50 story atrium and served as the host hotel for the International Olympic Committee during the '96 Summer Games. With its wonderful guest and meeting rooms, indoor/outdoor pool and attached Peachtree Center shopping and dining options, the Marquis may be our greatest hotel experience ever!
And, as the home of Cartoon Network, you can expect that Atlanta is a great family summer vacation destination! Within a short walk of the hotel are the world's largest aquarium (with the only shark whales in captivity outside Asia), the Atlanta Children's Museum, Underground Atlanta, Centennial Olympic Park, CNN Studio Tours, the World of Coca-Cola and more. A short trip via car or MARTA (which has a rail station attached to the hotel) brings you to the home of the Braves, Turner Field, as well as Six Flags over Georgia, Stone Mountain Park, White Water, the newly expanded High Museum, Zoo Atlanta and its famous pandas, and, of course, world-renowned shopping, dining and so much more!
Don't miss out on the fun and fellowship. Our "reunion" wouldn't be the same without you. Plan your family's summer vacation for Atlanta today."
Anyone else thinking of going?
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Post by TriciaF on May 16, 2005 18:31:56 GMT -5
I looked at the prices for this years conference in Ca. If you are a member of the NDSC - I think $25 annually, the cost for the convention is $85 for an individual, $150 for a family. So...thats not so bad. The cheapest room however, is $109 per night and I'm sure thats before all the lovely taxes. But, with this much notice....I guess we can swing it. I am hoping we will have a really large group coming from South Carolina this go round (and UNOMAS of course!).
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Post by TriciaF on May 15, 2005 18:52:03 GMT -5
OK guys....I am really getting ahead of myself here....but can't help it. We were told at our SC Ds conference by the keynote speaker from NDSC that next year's conference will be held in Atlanta, GA. Sooooo I am planning to be there with bells on unless something really bizarre should happen. So.....its way ahead but surely we can plan some uno get togethers at the convention. I had planned to go to the Atlanta Ds conference next year....but I am wondering if they will have it since the national will be there in the same year.
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Post by TriciaF on Oct 7, 2004 19:04:19 GMT -5
Amy, Patrick had the blocked tear ducts for quite some time when he was little, as did my older son, Connor, briefly. Connor grew out of his by about 5 months, but Patrick only grew out of one by about one year. The other had to have surgery to open it up and our eye doctor did the surgery in conjunction with out ENT doing ear tubes.....so only out one time. It was so wonderful to not have to clean that gunk out very few hours.....it always makes them look so much like little thrown away kittens I always thought. You both will enjoy it so to be done with it, I promise.
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Post by TriciaF on Oct 10, 2004 22:35:54 GMT -5
Bumping for Rene, Jordan's mom
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Post by TriciaF on Sept 28, 2004 10:57:39 GMT -5
LMAO...A!!!! You are GOOD girl. I am amazed and relieved that you found such a good picture of the "wrap-around" nose piece. You saved me lots of grief trying to explain what it is. I just wanted to chime in and say that that nose piece....whatever they actually call it exists and does work well and you should be able to get it put on as a replacement for any glasses with regular nose pieces. Patrick's frames don't come with it....his doc puts it on all Patrick's frames in the office. So, take a printout to your eye doc and tell them to get one for you to try.
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Post by TriciaF on Oct 10, 2004 22:36:24 GMT -5
Bumping for Rene, Jordan's mom
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Post by TriciaF on Aug 29, 2004 10:50:23 GMT -5
Thanks for the info guys, I have checked with our State's Disability library and they don't have Sara Johnson's books, so I am going to request that they order them. I meet many parents interested in this topic. Check out libraries near you at the link below. Our state library is free for parents and they mail the books or videos to you with a postage paid return envelope. 129.252.120.227/library/CDR/otherlibraries.htm
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Post by TriciaF on Aug 21, 2004 15:09:28 GMT -5
In this article on Dr. Leshin's site it comments at the bottom that there is no evidence that children with Ds have more broken bones than typical children. It was an interesting read, however, and if your child has any of the other orthopedic and hip problems, etc, I would think it could contribute to being a bit clumsey. www.ds-health.com/ortho.htm
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Post by TriciaF on Nov 2, 2004 23:39:14 GMT -5
Annie!!! That is fantastic...way to go. Boy, I bet you are having to buy new clothles like crazy.
I have got to get myself under control....after losing 18...I am back up 5. It doesnt' sound like much...but its creeping and my appetite is outta control....and there are tons of left over halloween candy...calling my name as I sit here.
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Post by TriciaF on Oct 10, 2004 22:30:28 GMT -5
Bumping up for Rene, Jordan's mom.
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Post by TriciaF on Dec 9, 2003 2:05:41 GMT -5
I am psyched! I went by a eye docs office today and they finally have a pair of the twisty frames that will be small enough for Patrick (age 3 1/2) and also will have the cable arms! They are ordering some in for us to look at. This office has been great, they even called the lab in town that fills all the medicaid perscriptions and got them to order another pair of lenses for Patrick's medicaid glasses. He has only had them since October 16th and they are all scratched up!!! And the office that I got them from basically told me there was nothing they could do about it! This lady is great, she really knows the ropes...just wait till I can bend the ear of the guy who ordered the first pair!
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Post by TriciaF on Oct 10, 2004 22:31:29 GMT -5
Bumping for Rene, Jordan's mom
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Post by TriciaF on Oct 27, 2003 23:26:27 GMT -5
Alice, when you brought this up I thought I had seen stats that showed kids with Ds having a higher percentage of eye issues than is typical. Here's part of a study that was on Dr. Leshin's sight;
The biggest problem with studies such as this one is that these surveys end up being biased toward the group that responds, rather than the group that is solicited in the first place. However, this study had a good base to start with, and a very good response rate to their initial survey request (80%). Also, several of the statistics arrived at in the study match previous statistical reports.
The children studied were ages 5 to 17 years of age. Besides the findings mentioned in the abstract above, here are some other interesting numbers:
33% of children with DS reportedly had a congenital heart defect, with the most common being a septal defect. 17% of the total group required surgery for the heart defect. 18% reported constipation. 0.1% had Hirschsprung disease. 0.1% had celiac disease. 48% had "glue ear," which is thick fluid in the middle ear cavity that won't drain. 10% of the total had documented hearing loss. 46% of all children had surgery for an ear condition, mostly for placement of tympanostomy tubes. 30% of the children had near-sightedness, 27% had "lazy eye" (strabismus). 54% of girls and 40% of boys were prescribed glasses. 14% had disease of the thyroid. 0.1% had diabetes. Of the 211 children with DS, 3 children had leukemia, 2 had hip disorders and 2 had AAI.
Then there was this off the NCSC web site:
Concern: Ocular problems Clinical Expression: (1) refractive errors, (2) strabismus, (3) cataracts When Seen: Eye exam by 6-12 months, then follow-ups Observed Prevalence: (1) 50%, (2) 35%, (3) 5% Management: Look for cataract; ophthamologic consultation
So, if this holds true, kids with Ds seem to have greater incidence of needing glasses I would guess. I really don't know the typical occurence, but judging by my older son's class....no where near these numbers wear glasses.
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