Just to keep everyone updated, I have sent the first ribbon (I live in Shreveport as well) to a local printer for Jenn. The only addition is, she has added "up with downs", or local support group name to the top of the ribbon, it looks awesome. When I get some pricing and timing back I will let Jenn know. We can then figure out a way to distribute them across the uno mas members that are interested.
I know there will be a lot of interest in our area.
Evan will be getting his RSV shots for the Third year. He got them when he was born (premature) last year because of his heart surgery and this year because of the flue vaccine scare and his size. His pediatrician said there is not really a cut of date or number of years they receive the shot it is normally based on health and growth.
Because Evan is still small for his age, although he is in good health, his medical conditions in the past, and the shortage of the flu vaccine his Pediatrician has started his RSV again this year. Most insurances will pay for the shot as long as it is referred and set-up through your pediatrician. We were suprised that he was going to get it again this year, but glad because when he gets his shots during the winter months he stays very healthy.
The synagis shot helps protect from RSV, upper respiratory infection that causes lots of problems with breathing and usually leads to about a week in the hospital, and in worst cases can lead to death. Evan qualified for it because he was born more than 5 weeks premature and had congenital heart disease. We thought that we would only qualify for the first year but our Dr. has been able to qualify him every year. It is a great shot, and it to date it has kept Evan very healthy through the yucky winter month germs.
The shot is measured by weight, Evan is almost 18lbs so he gets a shot in both legs this year. The shots are about 1300.00 each...and they have to send a home nurse to the house to administer the shot.
As for allergies, Evan shows all the same signs as you and I, runny nose, water eyes, itchy nose, itchy eyes. He was on Dytan last week and it is working great, it is not affecting his moods and seems to keep his allergies at bay for now. MB, we have never tested him for milk allergies that may be something to look into, he doesn't drink a lot of milk, right now his drink of choice is pediasure (I wish it was milk, a lot cheaper), but it is still lactose based so that could be an issue.
Thanks for all the input, I am glad you all enjoyed the pictures, I need to see if I can get a picture of his "Crawl" more like a frog hop, he sits to one side tucks his legs under his butt and bounces forward. If I could find a way to make a diaper that didn't wear from the carpet burn I would be rich .
Thought I would pop in and give a quick update on Evan.
He has been doing very well, he is starting to walk with the aid of a walker and is growing like a weed. He weighs close to 18lbs and is 30.5 inches long.
His pediatrician has scheduled him for the RSV shot again this year, he is not taking any chances and has convinced my insurance company to continue to provide this vital shot. With his weight getting up there the cost of the shots this year will be around $3000.00:o per month and he gets it October through April, thankfully we have good insurance. He stays so healthy during the winter months with the shot that it was comforting to know he was going to get it again this year.
He has started a new allergy medicine from Benadryl (not OTC), called Dytan and it is working great. He was on Zyrtec but it gave him bad mood swings, when we mentioned this to his Ped. he said there is something in the antihistamine in Zyrtec that causes mood swings in young kids (his ENT started him on Zyrtec not his regular pediatrician), guess we should have checked with him first
I have posted a couple of new pictures of him in the October folder of the photo album.
Post by Evans Dad on Sept 21, 2004 14:41:58 GMT -5
I just got an email of the picture order for the NYC Buddywalk - Evans picture is going to be the first picture in the presentation. I was wondering if anyone was going to be there if they could take a picture of our little man on the big board. I will attach the link that shows the order. It would be really neat to put in his scrap book, ofcourse we will order a copy of it but a digital picture would be pretty cool as well.
If you are going to be in attendance with a digital camera I would love a picture - you can email it to me at email@example.com if anyone can help.
Thought I would post our walk date as well - we are very excited this year, we are hosting it at a brand new park in downtown Shreveport that has just opened, Riverview. Chris Burke will be here with his band, and he is going to walk with us and then entertain. If anyone is interested email me and I can give you more information.
Post by Evans Dad on Sept 16, 2004 15:44:16 GMT -5
Don't like them at all, she tries to give an excuse in her comments, I am an avid ebayer and have a couple of friends that work for them, I have emailed them but don't really know the logistics about removing an auction, will have to wait and see. This should cheer everyone up..
Post by Evans Dad on Sept 15, 2004 12:58:52 GMT -5
I live in Shreveport as well - we will probably get some wind and rain but nothing damaging, hopefully. We have not had any weather alerts issued for Shreveport and we are far enough up in La not to be affected. I have a lot of relatives that live in New Orleans that made the journey up here yesterday to wait it out - All of us in Shreveport (our house, Jen's parents house, and both of Jen's brothers houses)are full of family. It is great to have everyone here even if we are fighting for space, too bad we have to see everyone when something like this is going on.
Jen and I did a lot of research on this at the time they asked us if we wanted the test done for Evan. We chose not to have it and it was later tests that discovered the DS.
The triple screen test is a little different than the regular AFP test that is more common. The triple screen measures not only AFP, but hCG and estriol as well. This test is more accurate and screens for additional genetic problems. We were told at the time we were offered that this was starting to replace the standard AFP test.
We were also told that an abnormal triple screen reading did not mean that the child would be born with some abnormality or chromosome defect, rather, an abnormal triple screen indicated that the fetus should be evaluated further. I guess not going through this I can't offer any good thoughts.
Sounds like you (Jackie) may be a good support for them, most of us experienced that waiting period, I know Jen and I did when she had an amnio at 30weeks (instead of the nornal 18-20wks), we only had to wait 72 hrs and it seemed like a lifetime. After our research the amnio was the only test we felt confident in, after markers had been identified in our level 2 tests, and we were consulted about doing the amnio.
I guess there is always a chance of a false positives,and false negatives that is why there is a need for more tests.
Hope all goes well, either way I hope they are excited about having a new addition to the family.
Just a quick update and picture - we are starting to get mobile (look out), his favorite thing right now is pulling up on anything he can reach. He is eating and growing like a weed. Have a great weekend
Last Edit: Aug 13, 2004 15:39:54 GMT -5 by Evans Dad
Funny seems not too long ago my wife and I came to this site with the same anxiety as you. Our son Evan was born on 12/7/02. We found this site about 2 months before he was born, it was great just to read the various posts about issues with our kids and also the posts about what are kids are really doing. We asked lots of questions...
We too felt very scared, in doing our research we stayed away from medical books (they always depict the bad things), there are lots of good books. We found Babies with Down Syndrome (2nd edition) to be the best for new parents. www.woodbinehouse.com is a great place for books about Down Syndrome.
Remember that you are not alone, even though we are fairly new parents we have been through a lot, and even the parents with older kids remember exactly what you are going through right now. Family and friends support is amazing, and research is a powerful tool that will only help friends and family support even more. We found our local DS support group before Evan was born and went to meetings where we got to meet kids with DS and ask questions face to face. That was also a big help.
We could not have asked for a better son. Evan lights up everyone he is around, I can have the worst day at work and when I get home he makes me feel so awesome that words can't explain it. He is very loving and happy. All of our kids have different traits and personality's, but the one thing they all share is that extra chromosome that makes them so so special.
If you have any questions feel free to email me at -- If you are interested in the book I mentioned above send me your full mailing address and I will send them to you.