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Post by Evans Dad on Sept 30, 2008 11:59:48 GMT -5
Amnio at 30wks, due to the heart condition noticed on ultrasound. Since Evan's heart condition was synonomous with other more serious genetic defects it was done to define which one Evan had. It was still our decision, we are about 2 have #2 tomorrow (wed 10/1) and we have not done any testing except the routine ultrasounds - we know it is a boy, and from what we have seen on ultrasound everything looks good.
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Post by Evans Dad on Oct 31, 2007 10:03:07 GMT -5
Interesting article published by the AFP:
CHICAGO (AFP) - Treadmills can help infants with Down syndrome learn how to walk months earlier than traditional therapies, a new study has found.
Parents of 30 babies with Down syndrome were asked to help their children walk on the treadmills for eight minutes a day, five days a week.
They sat on a bench which straddled the machine and held their babies as the treadmill belt encouraged them to take steps.
This exercise helped the babies learn to walk up to four or five months earlier than traditional physical therapy alone, the study found.
More intensive training helped the babies to walk even sooner, the study found.
The intensity of the training for half the babies was increased gradually after the infant could take 10, 20, and 30 steps per minute.
The speed of the treadmill was increased, as was the length of training. Some children were also given light weights on their ankles.
Children with Down syndrome generally don't learn to walk until 24-28 months, about a year after children without developmental disabilities.
Getting them walking sooner can help improve their social skills, motor skills, perception and spatial cognition, said study author Dale Ulrich of the University of Michigan's Division of Kinesiology.
"The key is if we can get them to walk earlier and better then they can explore their environment earlier and when you start to explore, you learn about the world around you," Ulrich said. "Walking is a critical factor in development in every other domain."
Down syndrome occurs in about one out of every 700 births.
Ulrich said he hopes hospitals and support organizations will rent the treadmills -- which cost about 1,200 dollars -- to parents of children with Down syndrome.
The study was published in the October issue of journal of the American Physical Therapy Association.
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Post by Evans Dad on Oct 31, 2007 10:06:02 GMT -5
We are going through the same thing with Evan right now as we are trying to potty train him, we have just started him on Miralax which is now available over the counter, we give him 1 table spoon per day and mix it with his drink - we have seen an improvement in less than a week. May want to ask the pediatrician because of age, but I think it is safe for all ages.
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Post by Evans Dad on Jun 7, 2007 15:58:46 GMT -5
Jennifer We have been battleing insurance for a while with no luck as well. A lot of insurance companies have clamped down on durable medical equipment that can be compared to every day equipment (although a sturdier piece of equipment the Maclaren Major resembles a typical stroller). If you can appeal, go with the direction of needing it for muscle tone, stability support, and posture support, with some focus on it being used in the house on a daily basis to help perform daily activities such as eating. You will have to step out of the range of the Maclaren because it is too typical of a stroller, and move more into a pediatric wheel chair. You will need letters from therapists, doctors, etc. that show the insurance company that having this will improve the future of your childs health and well being (at least this is what I was told). I believe insurance companies should cover anything a doctor writes a script for (if the doctor feels it is medically necessary and is willing to sign his/her name on a script, why should an insurance clerk or supervisor be able to over rule a doctors direction). I am sure past abuse by individuals has made it difficult for kids that really need this stuff to get it. Because Evan is still low weight (only 30lbs) we decided to buy a Peg Perego Aria model (advertised to hold 45lbs, but if not in constant use 50lbs per the Peg Perego representative). So this should last a couple of years at the rate we are going. Here is another company that we found during our search and would have considered if he was a little taller and heavier, doesn't look like the best travel stroller, but to use for getting around town. If they are still making them when Evan is a little bigger we will probably get one. www.kinderkart.comGood luck Clint
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Post by Evans Dad on May 21, 2007 18:37:44 GMT -5
Well the subject says it all - looking for a little help. I need to submit a letter to my insurance in order to get Evan an Adaptive Stroller. His pediatrician will help, but said I would have more of an input. Anyone have to write one or have samples of a letter I could borrow. If you have samples email them to me at swanny297@comcast.net
Thanks Clint
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Post by Evans Dad on Jan 26, 2007 16:32:00 GMT -5
For everyone in the Shreveport vacinity I wanted to post the details for the Down Syndrome event at our local Barnes and Noble.
I just spoke with Elizabeth at the Shreveport location. This event will be held on Saturday Feb 10th @ 2:00pm. The NDSS promo says ages 6-8, but Elizabeth thinks that ages 3-8 would be good (this is the same age they use for their Friday night family story times). There will also be an activity and probably a snack.
Clint
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Post by Evans Dad on Dec 6, 2006 12:54:30 GMT -5
Hey Everyone Hard to believe that a little over 4yrs ago I came to this forum clueless and in need of help. Well our little man turns 4 tomorrow, where has the time gone. He is doing awesome in school, although no words yet, he comprehends very well. We are seeing that this year will be the year for Christmas, he gets so excited when we turn the tree lights on, he loves the village on the mantel, and is amazed by the outdoor lights, it is pretty neat to see. When we turn the lights on he runs around the house going "ho ho ho" so we really think this is the year he will get excited about Christmas. Anyway just a quick update, we are gearing up for our Down syndrome Christmas party on Saturday, along with his first official school friends birthday party. I have attached a couple of pictures that were taken over Thanksgiving, enjoy. If I don't post before Christmas, I hope everyone has a great and safe holidays. Clint
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Post by Evans Dad on Nov 9, 2006 16:26:50 GMT -5
Hey Everyone Sorry I have not posted in a while - I have been reading and keeping up to speed. Hard to believe it was about 4 years ago today I made my first post. Evan will be 4 on 12/7. He is doing awesome in school - we are working on potty training and speech. His speech is still delayed, although he babbles non stop. He has been very healthy this year which has been nice for a change. Anyways here are a couple of halloween pictures of our big man. Clint
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Post by Evans Dad on Aug 15, 2006 12:00:42 GMT -5
Chances are if you have not been notified by mail yet, than the pictures were not chosen. We have a few people in our group that received letters around the beginning of August stating their pictures were selected.
If your pictures are chosen, you are sent a letter from the Buddy Walk group at the NDSS.
Clint
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Post by Evans Dad on Jun 14, 2006 11:00:41 GMT -5
Unfortunately the designation on your wording and pictures states copyright, not trademarked (a "C" symbol vs "TM") There is a big difference between the 2.
The wording you specify as being trademarked is not identified as "TM", a trademark violation. Uno Mas, Uno Mas!, "One more", "a little something extra" because copyright doesn't protect titles or slogans.
Either all of this is copyright material or trademark material. From what I see on the site the copyright symbol is used, don't get the 2 mixed up.
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Post by Evans Dad on Jun 14, 2006 10:35:56 GMT -5
You need to watch the wording in the copyright laws. Our group name has been copyrighted by other groups, but as long as our artistic approach is differen the name can be used. Here is the main disclosure in any copyright:
Copyright is a form of protection provided to authors of "original works of authorship," including literary, artistic and dramatic works, musical compositions and other creations.
Copyright protects the author's original expression as contained in the work but does not extend to any idea, procedure, process, method, system, discovery, name, slogan or title.
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Post by Evans Dad on May 31, 2006 12:39:20 GMT -5
Our son Evan has been in daycare and pre-school all along. Unless there are special medical needs (besides therapy), your SIL's neighbor should be able to enroll in any day care. Evan had a feeding tube for the first year, and was enrolled in a typical day care, we just had to spend a 1/2 day with different teachers and show them how to use his pump. I know a lot of daycares are hard to get into because of capacity and waiting lists, but DS should not come into play at all.
If she thinks they are not accepting her child becuase of DS, the local health department should be able to help resolve that.
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Post by Evans Dad on May 31, 2006 16:04:19 GMT -5
Geneticist should be able to do it fairly quickly - if they can do a fish test with amniotic fluid and have the results in 48hrs, I am sure they can do it through blood work just as quick. It is not their choice if they want to re-do the test, they did the wrong test in the first place. I would go back and have them do the test you requested.
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Post by Evans Dad on Apr 28, 2006 18:16:40 GMT -5
Both my wife and I work full time - we have a son Evan who is 3yrs old. He has progressed just fine, in fact we always thought that he would progress a little better especially in a setting with typical developing kids. He has been in daycare since he was 3 months old and has done extrememly well. He has actually done so well over the past 6 months that he will be starting ECES at a regular school in August. We think his exposure to all kinds of different kids will really help him transition into the public school system. Therapists and professionals will still do their therapy outside the home - Evan's natural environment was considered daycare because that is where he has always been.
Congradulations on your little one - good luck
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Post by Evans Dad on Apr 28, 2006 18:23:21 GMT -5
Evan has started doing some gymnastics and loves it. We did have to take him for a neck x-ray. I am not sure what the x-rays are for but I know kids with DS need them before any kind of sport. Our pediatrician wrote a script for the x-ray, we went to the hospital had it taken and 1 day later got the OK from our pediatrician. He is also going to do horse therapy in September.
Clint
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