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Name:  heidi    Email:   
Child:  ashlie
Comment:
414    Sunday, 31 March 2002 - 08:29:37pm
i just wanted to tell everyone happy easter. ashlie loved her basket from the bunny and hunting for eggs at her aunts house but i think she really love the crackers that gm and papa filled the eggs with.
 
Name:  steff    Email:   
Child:  Olivia(4)
Comment:
413    Sunday, 31 March 2002 - 03:40:24pm
HAPPY EASTER!!!!!

Well folks have a great day.. My mom and dad came to pick up the kids last night cause guess what I have strep and have about 0 energy .Oh man Annie you were right.Not feeling real spiffy this morning either.So back to bed I go... See ya... BYE
 
Name:  gramma joan    Email:   
Child:  Zoë Elizabeth - g/daughter
Comment:
412    Sunday, 31 March 2002 - 02:10:29pm
Becky....if you're reading this...I tried to send you a message and it came back. Perhaps I wrote the address down wrong. I am positive I got the first part right but is @sirius.net correct?
Take care, and Happy Easter
gramma joan from Canada
 
Name:  jackie    Email:   
Child:  Emily......21!!!!!!!!!!!!!
Comment:
411    Sunday, 31 March 2002 - 01:54:53pm
CONNIE.....THANK HEAVEN FOR LITTLE GIRLS!!!!!!....ps LOVE her name.....
 
Name:  Dawn    Email:   
Child:  Shawn 9
Comment:
410    Sunday, 31 March 2002 - 04:41:29am
Just thought I would stop by to wish everyone a Very Happy Easter. I really do miss everyone!!!!!!!!!!!! I hope all is well with everyone. Shawn is doing OK. Really keeping me busy. I have school pics I want to show off so when I get them scanned I will share. They are actually pretty good. Give all them awesome kidos a big hug from me. Take care!!!
Dawn
 
Name:  Annie    Email:   
Child:  Mikey 7
Comment:
409    Sunday, 31 March 2002 - 04:18:43am
Hello Everybody!
Connie:Congradulations on your new baby girl!!!
Radonna: No problem!! I am so happy to hear that the brushing is helping!!I can't believe I didn't think of tying a string on the car!!LOL

Lindy: What a great story!!:)

Christie: Thanks for sharing that story on the stubborness! I printed it out and I am going to give a copy to his teacher's.

Happy Easter Everyone!
Annie

 
Name:  Lindy    Email:   
Child:  Jenna (19 months)
Comment:
408    Sunday, 31 March 2002 - 03:10:44am
Today for the first time I was approached by another parent of a child who had Down Syndrome. He was really nice. He told me about his daughter who is 40 and how she carried the Olympic torch through Daytona. He also told Jenna her best years were yet to come. It was sweet, I got all teary eyed. Im such a sucker for that kinda stuff.
So far I love Florida. Living in Nevada was a big bummer. I don't have to drive 4 hours to go to a wal-mart anymore!!!
Well, I guess I'm done...Happy Easter Everyone.
 
Name:  allisa    Email:   
Child:  Erin2 & 2 brothers
Comment:
407    Saturday, 30 March 2002 - 10:53:46pm


Hello Everyone...

I am suppposed to be filling little plastic eggs with m&m's and jelly beans, but here I am, surprise, surprise.

Welcome Jodie.... I e-mailed you ( I want you to remember us next time, too !! LOL ) You are right, though, this is the best DS site on the web !!

Radonna, I am so glad you got the brush !! Annie... you are the best !! I read on the BB that you said you have a tough time getting Kaden's attention.... I really really hope this will help you. If he is not seeking input all the time, he will be able to give you his attention, because now he has it to give .... keeping my fingers crossed for you both !!

I met a mom in the store today who has a 31 year old daughter with DS..... I could tell by the way she loved Erin that she must have a child, too... but she didn't say anything, then lo & behold... she caught back up to us in the mext aisle & wanted to show me her daughter's picture. I am so glad she stopped to chat. Her daughter had a full time job ( 40 hours... medical benefits...great stuff) but unfortuneatly company relovated & commute was not possible.... but so nice to hear great stuff in store for the future.

By the way... Lauren Grace is Connie's girls name !! though daddy is calling her Gracie.... what a beautiful name ( both of them !!)

Have a nice weekend all !!

Allisa
 
Name:  Ro    Email:   
Comment:
406    Saturday, 30 March 2002 - 10:35:54pm
Sorry forgot.
Although I dont make it as often as I used to I wanted to let you know I really appreciate the board. All your hard work does not go unnoticed I assure you.
Thank you very much:)
RO
p.s. didn't UNO MAS just celebrate a birthday????
 
Name:  Ro    Email:   
Comment:
405    Saturday, 30 March 2002 - 10:32:44pm
Michelle,
I noticed your post on the BB and was wondering how Casey is today following his surgery????
Hugs to little man and hopefully he talking your leg off and that his pain has subsided.
Hugs to you and yours.
RO
 
Name:  Radonna    Email:   
Child:  Kaden
Comment:
404    Saturday, 30 March 2002 - 09:57:44pm
Jodie; Welcome to Uno Mas. I look forward to hearing more about your little girl!

Concerning the weight issue. Kaden is bone thin except for his belly. And boy can he eat. He eats larger portions that My husband or I do. He is NEVER full. Or never thinks he is full. He will ALWAYS eat. By the end of this month I will have the Celiac's test done and clear up some of my questions on why Kaden is so tiny. I just can't understand it at all. Now that Jonathan has grown taller He looks like the older of the two. I have given Kaden Ensure for the last 2 years on top of his meals. I have had him up to 39 pounds once, but now he is back at 32. He looks like the pictures of the children on the Save the children infomercial's I know that struggling with a weight problems is hard. I have all my life. I just am not sure what is harder on me. Dealing with being overweight like My Husband, me and my 2 year old are or dealing with trying so hard to keep the weight on Kaden. He has always ate really healthy. He doesn't like snack cakes or chips. He prefers real food and loves veggie's I make sure that he eats well rounded meals and offer lots of choices. Then I am scared of once that I know why Kaden isn't growing and correct the problem, his overeating will have him overweight in no time. BUT the position that I am in. If Kaden doesn't eat allot he looses weight. He was in the hospital as a baby because he was 6 pounds at 6 months old. I can't limit him. Maybe I should, but I am so scared of him loosing more weight. All the people in our family are HEFTY going back generations and here Kaden is the Lone Ranger. I know my baby Jonathan is overweight He is 47 pounds at 2 years old. I do not want him to be fat!! But HOW can I shove food down one and limit the other. This weight issue is the biggest source of stress in my house. It is like everything revolves around food. How much Kaden ate. Not letting Jonathan have too many cookies, Feeding Kaden an extra meal while Jonathan is napping. I weigh Kaden all the time. WAY more than I weigh Jonathan. I guess some where in my head I got that chubby babies were healthy ones. I don't feed either of my kids junk. The sweeting thing they eat are fig newtons and I occasionally buy oreo's because they are Jonathan's favorite. But overall the way my kids eat is healthy how can one be so big and the other so small.

Well that is my venting for the day.

Congradulations CONNIE!!!!!!!!!!!!!!!!!!!!!! PINK PINK PINK PINK PINK PINK PINK PINK PINK YOU can finally buy PINK!!!! Can't wait to hear the name.

Shannon, sorry to hear that Jamie is sick. I hope he feels better soon.

Happy Easter EVERYONE!!!!!!!!

Oh Allisa, Annie Mikey's Mom sent me a brush. I had been using a loofa sponge and a glove. I had no clue what type of brush to use. She also sent me some more information on brushing. It is working so well. The face slapping and hair pulling is almost non-existent!!! Kaden loves it!! I am still kind of worried that I am doing joint compressions wrong. But all in all this is working so well for us. Thank you for bringing it to my attention

And Annie thank you so much for the brush
She even sent the boys matchbox cars that really impressed Jonathan. He loves cars!! Kaden likes them in you take a shoe string and wrap it around the wheel so that it will DANGLE!:):):)

Hope the Easter Bunny is good to everyone!!! I wish that it was prettier outside. It is so gloomy and rainy here.

Talk to ya later,
Radonna
 
Name:  Ro    Email:   
Comment:
403    Saturday, 30 March 2002 - 09:41:33pm
Congrats on the baby girl Connie:0)
Now maybe you can pass along the secret????? Not that I want to try again for a girl but...... You had 3 boys and finally the girl. Robin I would say that we have definate need for a tutor:)LOL Boys boys boys:) Not that I am complaining mind you; they could have arrived full grown with attitudes.

Since this weekend holds major work for the bunny(don't ask me to hop, it won't happen), I thought I would roll by and wish everyone a great holiday and a fun bunny day:)

Happy Easter Everybody!



Hugs from Texas.
Ro and the funny bunny bunch:)
 
Name:  Mary L.    Email:   
Child:  Patrick + 3 brothers
Comment:
402    Saturday, 30 March 2002 - 08:24:24pm
Hello everyone! I just wanted to say Happy Easter today because I will probably be to busy tomorrow to get on the computer.

Welcome Jodi ~ I am Mary, mom to Patrick (I expect to see that the next time you list who you remember! LOL) Congratulations on the birth of your daughter - I know this time can be an emotional roller coaster but things do get smoother after a while. I was just saying to my husband yesterday that after we had Patrick I thought EVERYTHING in our lives had changed and that we would never be a "normal" family again. It's funny now because 2 1/2 years later I feel like we are a "normal" family and that the Ds is just something we deal with like we deal with my 5 year old needing a speech therapist and the tons of other stuff that comes up with all my kids. You sound like you are doing well with everything - good luck going back to work and I can't wait to her more about your little girl.

Susan ~ I hope Emily has a great time at camp - I seem to remember you being very nervous about it the first time (I must have been real new to the site and just a lurker back then!) It is so great that she likes it as much as she does. Congrats on your continued weight loss - I am going to try Oprahs guy - Bob Greene - he has a book out - Get With the Program - and I like his approach so I am going to give it a try - wish me luck!

Christie & Jackie - Thanks for all the ideas about nutrition with our kids. I am noticing a change in Patrick's eating habits already - he used to like just about everything but now he is refusing a lot of foods - and seems to be gravitating towards the sweeter stuff so I am going to try to nip that in the bud. He also will keep eating way past when I think he should be full so I will also keep an eye on that.

Renee ~ So glad to hear Laurens IEP was successful. Patrick just turned 2 1/2 so we will be going through all of the IEP's and school stuff soon so I am sure that I will soon be turning to you guys for advice!

Well, Patrick just woke up from his nap so I better go ~ have a great wekend everyone and a happy Easter to those who celebrate it!

Mary L.
 
Name:  Susan    Email:   
Child:  Emily , age 10
Comment:
401    Saturday, 30 March 2002 - 06:19:53pm
JODIE: Welcome to the Message Board!!! I think we've chatted before.....please come to chat often! We have a great time in there! Chats are every Sunday and Thursday nights at 6pm Pacific time, 9pm Eastern time. WOW! I'm impressed....you have learned which mom goes with which child in a hurry! This is a busy place and soooooooo many wonderful kids! I'm so glad you found us!
~
Well....we're off to shop. Next week, Emily leaves for CAMP! There are lots of things she needs, so we'll take care of that today and then I can relax about it. (yeah right!) I do remember so well 2 years ago when I was first considering letting her go away to camp. I heard so many stories about kids with special needs going to camp and I hate to admit it, but I sort of felt that their parents just didn't care for their kids cause I just could NOT relate to letting Em leave home for an overnight camp. But we did it, and she learned so much! She gained so much more independence during that one week! So, now...this will be her 3rd camp and she is really excited. This camp has a 1:1 camper/counselor ratio. Em's counselor called last week and she sounds like so much fun. Emily will have a blast....and, LOL her brothers are looking forward to it too!!!
~
Have a great Saturday and a wonderful Easter!
HUGS,
Susan
 
Name:  Jodie (again)    Email:   
Comment:
400    Saturday, 30 March 2002 - 05:54:44pm
I'm back.
One of the things that made me so sad was that I thought that all DS children looked alike and that our baby wouldn't look like us. I really cried over that. So, I was so happy to look at the photo album here to see all the children and how different they all look. They are just absolutely adorable! You can really see their personalities in the photos!
Another big concern that I had was that I thought all people with DS were overweight and was wondering if there was anything that could be done about that. So the recent discussion on eating habits, etc has been so helpful. Really appreciate the article, Christie.
Jackie, I so appreciate your comments as the voice of experience and wisdom. And absolutely love your sense of humor.
Radonna, I love the Kaden stories and photos! Too cute.
And Steff, Olivia is such a kick! Just the cutest.
I am slowly figuring out who is who. I think I have Jackie and Emily D (love her pictures, too!! - especially the Emily and Elvis ones). Radonna and Kaden. Steff and Olivia. Susan and Emily P. Christie aka CC and Christopher (is that right?)
It will take me awhile to figure everyone else out but I'll get there. I know I will be checking into the site regularly.
I return to work Monday after 2 mos maternity leave. Pretty sad about that but relieved to find a good day care provider for the babe that is right down the street from dh's work and sil's house. That makes me feel better.
One thing I would like to know is about the teen and adult years. Is there a website as uplifting and positive as this one that would give me some insight on the later years?
Thanks again everyone. You have helped so much!
Jodie
 
Name:  Renee M    Email:   
Child:  Candace 21
Comment:
399    Saturday, 30 March 2002 - 05:51:21pm
Jodi
Welcome to the site! I am sure that you will find a lot of comfort, support and encouragement here. As you can see, we have all been there. I am sure that anyone of us can answer any questions that you have. As you can see I have been doing this for 21 years and it has been an abosulte joy and blessing. I wouldn't change a thing.
Take care
Renee
 
Name:  Jodie    Email:   
Comment:
398    Saturday, 30 March 2002 - 05:37:52pm
Good Morning Everyone,
This my first time posting, but I have been lurking for a couple of weeks. I did join chat Sunday night but spent most of the time just "listening" to everyone else chat.
I have a cute little baby girl that will be 2 months old in a couple of days. I didn't have any tests but when I had a high resolution ultrasound the doc said, "There are no guarantees, but you couldn't have had a more perfect ultrasound." That made me feel good except that, like others have commented, I just had a slight feeling that things were different with this pregnancy. I don't really think I thought DS was a possibility, but something.... Anyway, when she was born they whisked her away to another hospital because she was having trouble breathing and the pediatrician came in and told me that she had some signs of DS. I guess I was pretty unprepared for that. I cried alot for several days but kept thinking that the test results would show otherwise. I had a million questions (still do) but didn't have a clue where to go to find answers. I looked everywhere on the internet and have to tell you, most sites are either not very informative, too clinical, or way too negative and depressing. Then, by some miracle, I found this site. You guys are the best!! So realistic but POSITIVE. It makes me feel like this is completely doable.
I have also learned more from this site than I had from any of the other more clinical (and depressing) sites. It means so much, too, to get the information from moms and dads that actually experience the difficulties and the joys.
I have more I would like to say but have to go nurse the little sweet girl. So I will be back.
Thanks so much for all your help so far!! You just don't know what a difference y'all have made (no, you probably do know).
Jodie
 
Name:  jackie    Email:   
Child:  Emily......21!!!!!!!!!!!!!
Comment:
397    Saturday, 30 March 2002 - 05:32:25pm
CNRISTIE...that is a really good post....she has done some very good work on a subject that generally gets swept under the rug at most conferences and programs on DS.....I agree with the exercise...we need to get our kiddos into the "active" mode early in life....many of them have lower body wt obesity...which my hubby the endocrinologist says is not possible to control with diet alone...he says people with this wt distribution ...MUST ..exercise as well......this is the kind of wt that is mostly BELOW the waist....
Jackie
 
Name:  STEFF    Email:   
Child:  OLIVIA
Comment:
396    Saturday, 30 March 2002 - 03:08:51pm
CONNIE CONGRATS
 
Name:  steff    Email:   
Child:  Olivia(4)
Comment:
395    Saturday, 30 March 2002 - 03:08:07pm
Hi..Hmmm. Jackie. ...Well the other day when I met the gramma of a child in Kyles class at the store ...she came up to me and started to discuss food(she has a 31 yr. old with ds) well she thought she was gonna offend me but hey I am not that easily offended so I am glad we talked about it.(cause Olivia is so BIG)She told me what she has been telling moms of younger kids is to set a timerfor 1 hour(she SWEARS it takes folks with ds at least an hour to realize they are full) then see if they are still hungry.She said she thinks that is takes our kids longer to realize they are full rather than the average 20 minutes for most folks.Interesting...She was funny cause she said I didn't wanna offend you I just wanted to warn you bout the "FOOD" thing...As we are talking Liv is yelping MOM I WANT CHIPS!!!!! PPPPPPPLLLLLLEEEEEEEEAASSSSSSE!!!!!LOL!!!Well gotta git...

GO JAYHAWKS!!!! Hey if ya can't beat em join em!!!!!
 
Name:  Donna    Email:   
Child:  Jaymon and Lacey
Comment:
394    Saturday, 30 March 2002 - 03:06:52pm
Hello from down under
Hope that everyone is fine and doing well
Congrats to Connie on the arrival of your new baby girl
Just been reading about the eating....Lacey dosen't have a weight problem yet, maybe later at the moment we just really would like her to put on weight, We have to watch Jaymon though and I am pride to say that he has lost 4 kilos since he started school, this is great, and he is interested in what is healthy and what isn't. We rarely buy takeaway, and when we do it is a big treat. I don't particularly like the stuff but kids think it is great, I think it must have to do with the toys they get with their meal. We eat healthy most of the time because since Lacey was born I have lost about 45 kilos which I am very excited about and I am conscience of eating helathy all the time. Dh likes all the junky stuff though lol
Any way we are all well for the moment although Lacey did have a tempreture las night but as soon as it arrived it went so I don't know what is was maybe a tooth perhaps, Today we went for a drive dowen south to a place where they have miniature trains with some other families and I think the country air did Lacey the world of good.
Any way must go
And everyone have a VERY HAPPPY EASTER!!!!
Love Donna XXXXX
 
Name:  Christie    Email:   
Child:  Christopher, 9
Comment:
393    Saturday, 30 March 2002 - 03:01:14pm
Just to add to the weight discussion, I have to say as of yet Christopher is not into eating much, never has been. Although give him Chocolate YIKES, LOL

Took this from Dr. Len's site thought it was a good read on the topic. Another one a bit long but well worth the read.

Looking At Metabolism
by Joan E. Medlen, R.D., L.D.

Joan E. Medlen, R.D., L.D., is the mother of two boys, one of whom has Down syndrome.
She is a registered, licensed dietitian in private practice in Oregon and frequent speaker
at Down syndrome symposiums. This article was originally published in the journal
Disability Solutions, Volume 1, Issue 3, Sept/Oct 1996. Reprinted here with permission.
© 1996

In the first weeks after our son with Down syndrome was born, my thoughts strayed to his health throughout his life. My impression was that all adults with Down syndrome were very obese. As a dietitian, most of my work had been in the weight management area. I had seen first-hand the effects long-term obesity had on a person’s life. I remember emphatically explaining to my husband that we needed to be an aerobically active family. I asked him to consider cross-country skiing instead of downhill skiing, and to plan for activities like family biking trips.

Now, seven years later, Andy is a slender, tall boy, like his brother. He eats well, but not perfectly. He appears “active,” but it’s not very aerobic. And, when I look at other children with Down syndrome at conferences and in my community, there seems to be a mix of body types: some are slight and petite, some are thick and stocky, and some are overweight. Where did that early image of obese adults come from? Had I fallen for a myth? Could it be that this younger generation of persons with Down syndrome will not have as many obese adults? Has the increase in community inclusion changed the incidence of obesity?

Probably not. Research suggests children with Down syndrome are as active as their peers, yet use fewer calories overall. They appear to have a lowered Basal Metabolic Rate, which is the rate a person burns calories for fuel when completely at rest—or sleeping. This means that children with Down syndrome use less energy when they are resting or sleeping.
Taking that information one step further, it means that they use fewer calories throughout the day to accomplish the same activities as their normal peers. When Andy hangs out with his friend, and eats the same amount and kind of foods, does the same activities with the same intensity for the same amount of time, he will burn up to 15% fewer calories than his buddy. Since he ate the same amount of food as his buddy, but needs less to do the job, he has calories left over. These extra calories—even as few as 50 calories a day—can lead to an increase in weight. For example, 50 calories is equal to a half of a large Red Delicious Apple. The calories from half an apple left over at the end of the day for one year will lead to about 5 pounds of increased weight. If that continues for 5 years, it becomes a troublesome 25 pounds. With this in mind, it is easy to see how slender children and adolescents with Down syndrome can change into overweight young adults.

There are three ways to adapt for this difference in metabolism:

Increase activity
Limit calories
Increase activity and limit calories.

Focusing on Calories alone is one option. However, unless there are other medical reasons, it is risky to limit calories for children under 18 years of age without direct medical supervision. Children have great vitamin, mineral, protein, carbohydrate and energy needs while they are growing. Limiting calories may cause children to get too few of what they need to grow and develop well. For adults, a sole focus on calories becomes a battle of will-power, and feels like a punishment.

As with everything else, focusing on positives and abilities has a far greater effect. Beginning with a focus on physical activity has many more positives. A person can choose from a variety of aerobic activities that are enjoyable. Additionally, regular aerobic activity has many health benefits: increased muscle tone, decreased resting heart rate, decreased blood pressure, a sense of well-being , better sleep, and an increase in metabolism.

Being physically active, and focusing on aerobic activity doesn’t mean you need to be an Olympian athlete. For the average person, with or without Down syndrome, adding small amounts of aerobic activity on a regular basis makes a difference. Even small changes in daily activities can be beneficial.

Ideas for adding aerobic activity:

For parents, adults, and children:

Park farther away from where you are going
Take the stairs instead of the elevator. My son and I are often seen taking the stairs up and the elevator down -- many times.
Walk or bike to activities that are in your community.
When you go to the park, play "tag" for 10 minutes with the kids. Don't catch them, just chase them around. Parents think of swinging and climbing the play structure as being active. It's not aerobic activity, except when running between structures.
For teenagers and adults:

Use a push mower to mow the lawn.
Go on a long walk, hike, or bike with a friend once a week.
Join a local recreation facility.
Join a walking club.
Create some rules: for every one hour of TV watched, go for a walk around the block. (Be prepared to live by the same rules.)
Coming up with ideas to increase activity is the easy part. The hard part is choosing activities that are motivating. It is important that the person with Down syndrome make the choice of activity and be involved in setting the goals. The important part is to keep moving and have fun!
Working together as a team in the plans for activity will help. Sit down and make plans together. Write them down in a special place. Create a list of 3 small, but specific activities to add in a week. Begin with things that are 99% achievable. Talk about when these activities will be done and who they will be done with, if appropriate. Write them on the calendar. Then, create a way to keep track visually as those goals are met with a chart or check list. Remember to leave room for doing more than the goals you write down—a chance to over achieve!

For Andy, we hope to build habits that will last a lifetime, and be fun. Habits that will increase his activity overall, and hopefully, reduce the risk that he will have to fight the battles that extra weight can bring. And ours too.

Reference: Luke, A., Rozien, N.J., Sutton, M., Schoeller, D.A. Energy Expenditure in children with Down Syndrome: Correcting Metabolic Rate for Movement. Journal of Pediatrics, Vol. 125, 1994.

HAPPY EASTER EVERYONE ;-)

CC

 
Name:  jackie    Email:   
Child:  Emily......21!!!!!!!!!!!!!
Comment:
392    Saturday, 30 March 2002 - 02:54:47pm
Mornin'

Happy MARCH MADNESS....remember I am a KANSAS JAYHAWK through and through.....my kids were fourth generation students there and daughter Marnie spent two years as the BABY JAYHAWK mascot....so any of you with no particular alliegence to any other teams...cross your fingers for ROYS BOYS!!!!!!!!.....LOL....Emily really gets into basketball too....LORENA...maybe this will get you back on the board!!!!!!

Back to our eating issue....one problem with our kids I have noticed personally and observing others with DS thru the years is the apparent lack of a "turn off" valve in eating. Years ago in college we went to a sandbar party where someone bought their pet old white duck....and we kept feeding it baked potatoes....hamburgers....etc...all nite...by evenings end that duck had his belly literally dragging in the sand...he ate every single thing thrown his way....I used to watch Emily as a child eat and the vision of that duck kept popping into my mind. I often had to just take her plate away...to make her stop eating...it was like she never got full...but she seldom complained when I put an end to the eating either. To this day she cleans her plate....I mean "cleans" it....LOL...she will eat the lettuce...and all the garnish....but then so does her Dad who also has an extreme problem. I have learned the hard way to stop serving "family style"...I just put the correct portions on our plates...and either throw away or refridgerate the rest....sometimes I will put whole bowls of veggies that are low in carbs on the table if any one wants to fill up on those. Since it often takes a while for things to process for our kids ...I am wondering if appetite centers in their brains are somewhat slow to respond too. A suggestion I might make is to early on in their lives just serve them portions of food that the ADA would approve of for their age....get them used to..."sorry thats all there is".....I have seen SO athletes sometimes put 3 or 4 hotdogs on their plates at events...and eat all of them....I DO think it is possible to help them make healthy choices by making an issue of it early on in their lives....and isnt that what we do with all our kids....help give them the wings to fly with. One dieting trick I am trying with Emily now is to always leave a little something on her plate at the end of a meal..... Of course I am sitting here myself this morning trying to talk myself out of an English muffin with butter...and into yogurt and Fiber One for breakfast...LOL.....congrats SUSAN....know you have been working hard and now it is paying off....

Jackie
 
Name:  Terri    Email:   
Child:  Michael - 1 year yesterday!
Comment:
391    Saturday, 30 March 2002 - 02:16:40pm
I was so glad to read about the eating issues. Micahel has yet to refuse any food. He eats everything and never seems to know when he's full. If I offer it, he eats it! So, I've just started trying to figure out what portion size will keep him satisfied and that's all he gets. We eat pretty healthy and my other boys and my DH are pretty thin, so heredity is hopefully in our favor. And right now, Michael's weight is fine - but I'm still in control of his food. I worry about what will happen when he has more control over his eating. For right now, I'll just continue to offer him healthy choices as much as possible and hope it has some sort of lasting impression on him as he gets older.
 
Name:  Sonya    Email:   
Child:  Bronnie 7
Comment:
390    Saturday, 30 March 2002 - 10:58:46am
Hi all just a qick note on the eating habits. Bronnie also enjoys her food too much she will always come back for seconds , thirds if she thinks she can get away with it. What I have done is when seving the meals I will serve up half what I would normally then when she asks for seconds give her the other half seems to be fooling her for now! Her teacher at school is also monitoring how much she is eating at morning tea and lunch which helps.
Luckily Bron's favourite foods are quite healthy except for her passion for olives.
 
Name:  Joyce    Email:   
Child:  Arianna 3
Comment:
389    Saturday, 30 March 2002 - 04:29:18am
Hi Everyone!
I just finished reading your comments about weight and our kids being hungry all of the time. Arianna is always hungry it seems. She love to eat. She used to eat all vegetables and fruits and everything else, but now she does not like fruits and vegetables too much. She even is getting away from eating yogurt. I try to give her healthy snacks as much as possible because I am concerned about her weight for when she gets older. Right now she is average size but her belly is pretty large in proportion to the rest of her. The other day she couldn't even wait for dinner. I fed her before we ate, then she wanted to eat with me and my son and to top it off when my husband got home a little later she wanted to eat again. I would not let her though.
I don't give her much fast food and we usually try to eat healthy. One drawback is that she loves cheese so much. If anyone has an ideas let me know. I try to distract her when she wants to eat and it is not time for it.
Joyce
 
Name:  Susan    Email:   
Child:  Emily, age 10
Comment:
388    Saturday, 30 March 2002 - 03:00:53am
ALLISA: Never heard of a behavioral opthalmologist. We have a developmental optometrist in our town who comes highly recommended, but Em just goes to the ophthalmologist our whole family goes to. I'll be interested to hear more about this!
~
SHANNON: So sorry to hear Jamie is sick!! Hope he is better soon and no more trips to the hospital for him!
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RENEE: GREAT news about the IEP meeting going so well. Hope you have a wonderful trip!
~
JACKIE: Your post on nutrition in our kids really made me think. My Emily does not have a weight problem NOW. But if I left food choices totally up to her, it would be scary what she would eat!! She is CRAZY about carbs, just like her mom! I don't make the best choices about what we have to offer her at meal times, but I do limit how much she eats. She does have Pop Tarts, cereal, waffles, oatmeal for breakfast (no, not on the same day...those are her choices!), but she knows she can only have one serving. We use 1 % milk and she drinks a LOT! I've learned that if I find something for her to do as soon as she finishes eating, she will be happy to leave the table. She is very active, and I know that helps. I'm so much more focused on good nutrition now than I was a few months ago and I hope it will help Emily as well as me! (BTW.....I lost 2 more pounds this week!)
Anyway...thanks for those great points on good nutrition!
~
Have a wonderful Easter weekend!!!
Susan
 
Name:  allisa    Email:   
Child:  Erin 2
Comment:
387    Saturday, 30 March 2002 - 02:41:57am

It's me again.... I know we have talked about eye exams, etc in the past, but I was wondering if anyone has been to see a behavioral opthamologist.

It was recommended to us by Erin's teacher to see one. Her vision has been checked regularly every 6 months. And they always say it is fine, but she does turn her head to the side a lot & look at things from her peripheal vision ( sp ?? ).

I couldn't find one in my area, and not a lot of docs had even heard of one, but then a friend of mine whose son has Harshburgers Syndrome ( sp ??) told me she was taking him to see one & gave me all the info on this doctor.

So I was wondering if anyone had been to one, how much they differ from a regular optemetrist ?

Thanks !
Allisa
 
Name:  allisa    Email:   
Child:  Erin
Comment:
386    Saturday, 30 March 2002 - 02:19:35am

Hi everyone,

Just wanted to put in my 2 cents about junk food.... I agree Mcdondald's is way over-visited. And the thing is, though.... that a lot of people are treating Mcd's more like a snack than a meal.... running to a ball game or soccer practice, stop & get a happy meal. Then afterwards everyone goes home for dinner. The kids just had a 900 calorie snack ( not sure about the calories... that was a guess).

I think that is a great idea Jackie, to have a nutrionilst in on EI visits, or at least consulting on some sort of basis.

Erin is tiny, but she can eat.... so we do worry, & just hope she will stay liking the healthy food.

The hidden calories add up, soda & juice have calories that are useless to kids.

Sometimes the healthier alternatives are cheaper anyways... saving on the grocery budget & healthy eating....what more could you ask for ??

Allisa

 
Name:  Renee' A    Email:   
Child:  Laruen
Comment:
385    Friday, 29 March 2002 - 10:30:34pm
Hello to all
Just a qucik note to let you all know Lauren's IEP was a success!!!! We got her another day. She will be in the classroom one more day for 30 min, then go to PT, OT, and Speech one on one! I am soooo excited! THANK YOU ALL for your imput!
we are off on vacation. Have a great one and I will chat at you all later.
Renee'
 
Name:  Suzi    Email:   
Child:  Merideth 11mths
Comment:
384    Friday, 29 March 2002 - 03:13:12pm
Yeah Connie! (Sorry to hear about the emergency C though!)
Hope Jamie is feeling better soon!
Keep us in your thoughts everyone as Merideth goes back to cardiology for her next check on Tues...
I couldn't get to chat last night cause a certain kindergartener was playing hig LONG read along book CD....the one that's 21 chapters!It was 10:30 when Mike chased him to bed.
Steph:I still hafta hook you up with Mike's Aunt Nancy....your ? about Liv's weight reminded me cause Adel just underwent a major weight program last year...
Sam is around 36" & weighs 33lbs...I think Matt is about 64lbs & he's 51"~ a bit on the too thin side. I have to buy him slim jeans(he turns 9 in Aug)
 
Name:  Holly    Email:   
Child:  Jake, almost 3
Comment:
383    Friday, 29 March 2002 - 03:12:43pm
Boy, this morning is starting off rough. I don't know what the deal is but the kids are driving me bonkers. Every little thing.....Anyone have those days?
Congrats to Connie!
Jackie, I know exactly what you mean. My daughter drives me crazy with needing to eat every 5 minutes. I actually have to set the timer at times and say "No, you can't eat another thing until the timer goes off." She luckily likes pickles, yogurt, rice cakes, and at times healthier things but still! Jakey eats a lot of carbs. I have noticed more rolls on his belly lately. He is way more active but since he can't run and do all the fun stuff yet, he doesn't work anything off. I truly believe the TV is evil. Not that I am willing to give it up. I just have to make a conscience effort to turn it off and make the kids play. For those of you who are looking for meal plans and things I have found a great web site. meals.com. My main focus right now is making better dinners for our family. This place has really helped me. We are also trying to eat at McDonalds less. Not only to save money but to have our entire family eat healthier. It is such a struggle for us and I know that Jake has the double whammy thing going for him. Our family history and the DS.
Anyway, I am rambling......
Just wanted to touch base and let everyone know about the meals.com place. It really does have good ideas.
Holly
 
Name:  jackie    Email:   
Child:  Emily......21!!!!!!!!!!!!!
Comment:
382    Friday, 29 March 2002 - 02:44:01pm
STEFF....your post is making me get up on my newest soap box...the issue of nutrition in kids with DS...and just kids in general... We are a family who battles the weight issue every day and I am watching my kids go in the same direction with thier families...It seems that so many of our kids become obese in adolescence....I truly dont know if this is genetic...or couch potatoism.....probably a bit of both....but based on experience, I would counsel every family of a child with DS to start very early making healthy choices in eating and avoiding fast foods as much as possible....I heard somewhere that the average young family eats fast food meals 2-3 times a week!!!! Also it seems now that we are constantly shoving food into our young kids mouths every time they make a peep...starting with those silly cheerios....if they cry or fuss we plug them up with a pacifier or food and drink. Then we move on to juice boxes which are full of sugar...then on to french fries and Happy Meals...you get the drift....The point I am trying to make as the parent of a young adult with DS who has a mighty wt problem she is attempting to deal with...is this...if we start early teaching and talking with our kids about healthy choices vs non healthy ones...we will make them aware of how to take control of their own physical situation in regards to food....it is amazing at Special Olympics to watch some of the older athletes...grabbing handfuls of doughnuts...shoveling dollar after dollar into candybar machines...many of them literally waddling due to their weight. Ed sees many adults with DS who live in group homes or apartments...or who have jobs and many of them have no idea how to eat correctly and it is hard to change lifelong habits as most of you who are dieting know. I would like to see more work done with families of young children in terms of eating education. Lots of our kiddos start out with failure to thrive...but that changes as they grow up...and then we have even a worse problem to deal with...I think deorating their walls with food pyramid posters along with the ABCs would be a great idea.....you probably dont even realize all the stuff that Liv gets during the day....but even it kids, Steff, it all mounts up. I think sometimes we just assume kids are immune to wt gain from junk stuff because they all eat so much of it....anyhow..good luck....and someone come up with a fun but educational food chart for young kids!!!!!!!......another post from Mama Jackie....LOL..
 
Name:  allisa    Email:   
Child:  Erin 2
Comment:
381    Friday, 29 March 2002 - 02:21:31pm


Shannon, so sorry to hear about Jamie :( I hope things are better soon. I'll stop complaining about our little flu !!

CC.... I loved that ! I will print out & save for future & to show some of Erin's therapists... they love that stuff.

So happy for Connie & family !!! We are all waiting to hear the name !!

HAve a peaceful Easter weekend.
Allisa
 
Name:  Shannon    Email:   
Child:  Jamie
Comment:
380    Friday, 29 March 2002 - 01:47:16pm
Hi all!
Would you believe it? Just an hour after my last post, we had to take Jamie back to the hospital. Poor little guy won't keep anything down. They are testing him now for rotovirus. Man, that is some nasty stuff! My oldest had it when she was about Jamie's age and it was horrible. The nurse I talked to said that there are three other kids on the pediatrics floor with the same thing. Wish us luck!
 
Name:  Renee' A    Email:   
Child:  Lauren..3+
Comment:
379    Friday, 29 March 2002 - 12:52:40pm
YEA CONNIE!! CONGRATS ON THE NEW BABY GIRL!!! Can't wait to see photos!!
I am off to spend Easter in West Memphis. I will miss it here but I think my Aunt has a computer and I will try and chat while I am there. There is not a whole lot to do there. I hope you all have a wonderful holiday.
I have Lauren's IEP today. I am going to try and push for another day of school but I don't know if it will happen. I may be in for a big fight. Keep your fingers crossed for me!
Ok, I am off....I will talk to you soon.
Renee'
 
Name:  Susan    Email:   
Child:  Emily, age 10
Comment:
378    Friday, 29 March 2002 - 06:32:29am
CONGRATULATIONS TO CONNIE!!!!!!!
~
Well, the new baby has arrived! Connie and Michael have a healthy new baby girl.....7.1 lbs, 21 inches long. Blonde hair, blue eyes. She sounds beautiful!! Connie had to have an emergency C-section last night, but her hubby says she is doing good. Can't wait to hear more about the baby! LOL and to hear what her name is!
HUGS!!!
Susan
 
Name:  steff    Email:   
Child:  Olivia(4)
Comment:
377    Friday, 29 March 2002 - 05:06:20am
Hi all...

Well they are finally asleep.. :) WOW LIV was the BIGGEST crank today. YIKES!!! I don't what was up with her but man oh man. FINALLY at 8 she fell fast asleep.

I have a question for you all. Anyone live in the So. Cal. area? AND what I am really getting at is finding a good nutritionist in the area that understands our kids. I am really bummed out cause Liv seems to be losing her energy and not wanting to do anything physical. I know its the weight. I know it. I just can't seem to get it off her.ANY IDEAS?? I went and weighed her today and she is 6 pounds heavier than her bro who is 11 inches taller than her.I have tried everything and am at a loss.. I don't know what to do anymore and this is not healthy at all. Kyle is tall and 48 inches and 52 pounds. Liv is 37 inches and 58 pounds.WAY into the obese side of all growth charts. Now she has always been heavy but when she started walking she lost a lot. Now she has gained 6 pounds in a little over a month. I am gonna talk to her ped about it BUT thought you all may have an idea or 2 for me, THANKS in advance...

Jackie and emily I ALWAYS hated my first month of any new job.So hopefully this can be a stepping stone to what you want EM. Ya gotta start somewhere like your ma says...It sucks but its true... :( Hope you will like the job and learn lotz and gain lotsa good experience.TVO should be on the way soon. Think of the possiblities.. ALL those soaps you will get to tape... ;)

Welcome to anyone new!!! This is the best site regarding ds that I have found EVER and I am soo glad I found it over 3 years ago. Can it be??? YES... BYE
 
Comment:
376    Friday, 29 March 2002 - 01:43:44am
 
Name:  Martha    Email:   
Child:  Adrian 12
Comment:
375    Friday, 29 March 2002 - 01:31:37am
I am so glad I found this site. It is so inspiring to see all the positive things our kids can do not just what they can't do. I will try and get in the chat room tonight so I can talk to you gals and guys I haven't seen any postings from dads but I'm sure ther are some out there who will chat. talk later
 
Name:  jackie    Email:   
Child:  Emily......21!!!!!!!!!!!!!
Comment:
374    Friday, 29 March 2002 - 00:35:31am
CHRISTIE.....great post from your friend...I sent it to the teens and adults site where I also post and have gotten thanks for it already. I also shared it with my friend in Houston who runs a supported employment project...and her comments are that this could also apply to parents....caregivers...employers...job coaches...etc...anyone can be stubborn.......

Emily has tomorrow off...the State apparently takes off Good Friday so her job coach as well as her on the job supervisor will be gone. She is picking up speed...an issue that cropped up the first day so I am hoping they will continue to need her...For now she goes to work again on Monday and has been working 9-2 so far. Of course it is a minimum wage job so she isnt going to get rich quick...but it is a start!
 
Name:  Sonya    Email:   
Child: