FEBRUARY 2000

Anyone making plans to sit in on the Special Education Chat tomorrow night?

Okay:)

I have to admit I have a tendency to try and make anybody giggle but my son takes the cake:)

Coming home from Wal-mart(where else:)I proceeded to tell my son that my sister Brenda( an L.V.N. student) was right they would grow an extra toe at the age of 7 :)

After about 10 minutes of pulling their legs, my sister politely tells them I am lying out my WAHZOO :)

At this all 3 boys bust a gut laughing and carried on for a few minutes:)

My son Daniel after laughing so hard took a breathe and asked, with the most serious face, What a WAHZOO was.

He made my husband laugh so hard he had to pull over and wait till he had recomposed himself so he could drive the rest of the way up the DRIVEWAY:)

We still get a giggle out of that one:)

WAHZOOOOOOO:)

RO

Hi Stacey, It is good to know that I am not the only one that gets frustrated that my child can't walk yet....He is soooooo heavy ( he is 31 lbs ) I guess I will get big muscles in my arms. I know that he will walk in his own time, he has taken his own time with everyother motor skill that he has mastered. When is Brooke's Birthday? Clark was born on June 11, 1997. I am hoping to figure out the Chat room stuff...I got on and didn't get it.....I will try again and maybe we can chat !!!!

Hello everyone!! I must say, my mom gave me the address to the Uno Mas sight. I really enjoy it. My mom does as well. I would love to hear from some of you. I have a sister that is 8yrs. old, she is the same age as my oldest daughter. She attends kindergarten, but goes to special ed. classes two days a week. Her teacher was the one that gave my mom the address to this sight. I have recieved some letters from a couple of you here, I have copied them for my mom to read. She does not have a computer yet, but I hear they may be getting one soon. If any of you would like to write me, please do so!!! I enjoy learning as much as I can about d/s children. My sister Rachael is so very full of life and love. It is something that my parents, and the rest of my family did not think we would ever see. She started off very rough in her newborn life. But is doing wonderfully now. I would love to hear from you!!

Yes, thank you so much for the reminder, Ro..I have also seen it before...and even passed it along, but had forgotten..thanks again for keepin' us REAL.. :)
*hugs* Tina

I asked God to take away my pain. God said, No. It is not for me to take away, but for you to give it up. I asked God to make my handicapped child whole. God said, No. Her spirit is whole and her body is only temporary. I asked God to grant me patience. God said, No. Patience is a by-product of tribulations; it isn't granted, it is earned. I asked God to give me happiness. God said, No. I give you blessings. Happiness is up to you. I asked God to spare me pain. God said, No. Suffering draws you apart from worldly cares and brings you closer to me. I asked God to make my spirit grow. God said, No. You must grow on your own, but I will prune you to make you fruitful. I asked for all things that I might enjoy life. God said, No. I will give you life so that you may enjoy all things. I ask God to help me LOVE others, as much as he loves me. God said... Ahhhh, finally you have the idea.

Ro- Thank you so much for that. I'm printing it up. I'm sure I've read it somewhere before, but for some reason it really hit me hard today-like a direct word from God (through Ro!LOL!) and is so true that through all these things God does His work in us. Hopefully I'll grow one of these days...

Hi Linda, my son Jared is 8 and theres another mom here whose son is going to be 9 coming this summer. Is that old enough for ya? lol JK:)

marie

Hi Everyone, You all know me as Luke's mom. I enjoy hearing from every one that sends us E-MAIL. I would love to hear even more from anyone that would love to talk about our kids.(I can't get enough of them!) Luke is 10 yrs. old and probably an "old timer" compared to most of your kids! HAHA LOL!I would love for every one to keep writing to us & if anyone knows of any children about Luke's age please have them to write to us. We "old timers" need to find out any "new info." that's out noe ,that wasn't when our kids were borned. GOD BLESS you & ALL your little ones .....Hugs and Kisses to them all LINDA

Hi Tina, Just wanted to say good luck to sweet little Stevie-Marie on March 7. She will be in our prayers as always! Give her hugs & kisses from me & Luke

*HUGS* to Adrienne..... :)

I asked God to take away my pain. God said, No. It is not for me to take away, but for you to give it up. I asked God to make my handicapped child whole. God said, No. Her spirit is whole and her body is only temporary. I asked God to grant me patience. God said, No. Patience is a by-product of tribulations; it isn't granted, it is earned. I asked God to give me happiness. God said, No. I give you blessings. Happiness is up to you. I asked God to spare me pain. God said, No. Suffering draws you apart from worldly cares and brings you closer to me. I asked God to make my spirit grow. God said, No. You must grow on your own, but I will prune you to make you fruitful. I asked for all things that I might enjoy life. God said, No. I will give you life so that you may enjoy all things. I ask God to help me LOVE others, as much as he loves me. God said... Ahhhh, finally you have the idea.

Good afternoon all! I am once again getting very frusterated with the whole reflux thing. I am trying to be patient till our doctors appt with the GI doctor in March but sometimes it's too much. Just when I think he is doing good for a day or so he spits up even more. I know you all have given words of encouragement in the past and I thank you all for it. I just needed to talk today. I wouldn't give up this reflux boy for the world but I hope it will also end soon. I am hoping I can talk to the doctors about the surgery and maybe do the surgery. I just got my respit approved so maybe I can take a break every once and awhile. I feel like I am on my hands and knees all day following my son around and wiping up yucky stuff. I know I am sounding and being negative today and I am sorry for venting but I had to. Thanks for listening.

Adrienne

Hi heather and cindy:)

I found the book on line very simply. If you go to: www.amazon.com

and go to their search for books and type in Setting Limits ....it takes you right to the book and how you can order it. I found mine in Barnes and Noble if you have such a bookstore near you.

i tried to make it a link but it didnt seem to work?

I really like the book and its very deatiled and informative and has info on working with kids of all ages and some with special needs, though it doesnt mention DS specifically as i recall.

Hope this helps let me know!! :)

marie

To Toni, i am sorry the doctor said that to you, i think a lot of people dont have much sensitivity, or else they feel the need to say something and it doesnt come out the right way.

I wanted to say this. i think balance is a good thing. It is a sacrifice of my lfie in some ways to have my son. My life would have been different if he'd not been born with DS. caring for a reatarded person is not easy and there will be more demands on my life than maybe i would have.

It doesnt mean my son is a freak, or that i dont love him to pieces, but its harder, and more work in many ways, with extra time devoted to education, medical and twice a smany decisions.

I think some people want to express empathy, and i remind myself of that when someone apologizes when they look at me son, or seem sympathetic and the like. some days that sympathy is appreciated especially when jared's acting up. But they express their sympathy in the form of negativity. Myabe a lot mean it to be that way but i think some feel the need to say something and thats what comes out.

I understand your fustration i know there are times when people look at jared funny because hes 8 and throwing tantrums like a 2 year old. One time jared threw lollopops all over he floor in walmart and we got down on the floor of walmart and did not get up til everyone os picked up. the greeter lady felt sorry for jared and tried to help but i firmly told her NO he needs to learn and she let it go, but alas a symapthy look and i didnt mind it that day haha!!

I am babbling here and sorry. i guess what i was saying is that i think some people dont meanto be insesitive. i'm sorry this docotr was.

i hope you dont take this the wrong way.....but he was right on one thing, in some ways it is a sacrifice and as i'm sure you know not always easy. take care

marie

Cindy and Tina,

Saying a prayer for Kaylee and Stevie-Marie for the upcoming surgery. Also keeping you in prayer for peace and comfort during the procedure. From experience, I know that mommies struggle too!

Hugs!

Hi All- Just wanted to tell you that we took Kaylee to have her teeth cleaned today as I just found out that it's a good idea to do this before having any throat surgeries due to increased risk of infection when there's plaque build up. ANYWAYS! She did so good, sat through the entire thing (for about 30-45minutes) and let them do the whole procedure without one problem! I was shocked, to say the least-as it wasn't the regular dentist (who is a friend of our and works well with Kaylee) but the hygenist-and she was a wonderful hygenist! So, for all of you who are just starting the dentist thing, stick with it. Be firm. Be consistent (we went once a month for 3-4months just for 15 minutes each time to get her used to having tools and hands in her mouth) and it will get better!!! :)

Marilyn (JC) thanks for the encouragement about the up coming surgery. Good to hear that it was a quick recovery for Vinson. And Kaylee likes french fries so much, I'm sure she'll be eating those again within days.. :)

Have a good day everyone! Hope to get to chat with some of you soon..

Thank you Tina, Marie and Cindy for responding so quickly to my post yesterday about behaviors! I feel so much better already, even just hearing that other mothers are going through the same thing, and other children are just as hard to handle sometimes as Nicholas. Marie, I would like to know more about the book, as would Cindy. Thank you everyone!!!!!!

Good morning, I wrote in my story yesterday, My e-mail address was wrong, please change to twins@wnonline.net. The old address was tcld@wnonline.net. Thanks, Lisa

Hi everyone. I am a single mom with an 18 yr old DS son. He has surpassed everyone expectations, because of his severe heart condition,but with prayer and hopes we do not give up. Though he has Alopecia (losing hair) now and was wondering if any other parents had this conditions. Let me know if you do and what you are doing for it. Thanks

I was thinking about the insensitive comments made by health professionals.......I am an Rn working in an ICU........One of our Cardiologists told me that I was a "better person than him" b/c I wanted to adopt Jeffery.......He asked me... did I know the sacrifices I was going to have to make......to take care of a "retarded person"....."Why not let someone else do it"....I told him that Jeffery had enriched my life,,,,,,,,,he kept insisting that my life would be a "sacrifice".........I never did get through to him that keeping Jeffery was the right thing,,,,,,that I could no more give up Jeffery than I could stop breathing.........I finally told him....."Yes,,,,I am a better person than you" The other nurses,,,Jeffery's "aunts" were gathered around me glaring at him,,,,,,needless to say,,,We do't like him anymore........lol

Hi Lorena, We haven't met in the chatroom yet, but I have a little girl, Brooke, your son's age. She is close to walking, pushing her little ride-on-toy and taking 3-5 steeps between her dad and me, but I too get frustrated with her not walking yet. In her time, I keep telling myself. :) To everyone, I so enjoy talking with all of you! I feel like I make a new friend almost every night. As for some cruel comment someone gave me, a so called friend said to a relative of mine that she hoped we had learned our lesson, "four children is enough". O-well her loss. Friends like that no one needs. Hope to chat with you soon. Stacey

Hi, I'm am Lorena and I have a 2 1/2 son (Clark) with DS. He is such a joy to us !!! Wanted to know how old your children were when they learned to walk on there own....He is just starting to walk with a push toy...I guess we are just impatient !!!!

Great news!! we finally got a computer so hopefully i can stay on touch with more of you. I put our email address on here (what was my husband thinking--big ears I guess) if i got the address correct. Heather F: I know exactly where you are coming from about the behavior problems. Brittany is to me just entering the terrible twos and she will be three next month. She has started screaming. A very frustrated scream, not all the time mostly when I sit her in her high chair and her food is not like RIGHT THERE! She has a very bad habit of pushing her younger brother who just turned one last week. She likes to give him hugs and kisses too, although most of the time she shows it as a headlock or bodyslammer. She can't quite get the concept that he is smaller than her and she could hurt him. My dad tells me to spank her every, I mean every single time she does it and not to wear out before she does. my dad does not understand that look on her face that tells you she completely hasn't a clue about why you are spanking her. After all she thinks she is loving her brother and every time she is getting spanked. Time out has worked a little, more for her father than for me. I don't mean to gab, but today was extremely difficult. Me, Brittany, and Fletcher went out this afternoon after lunch. I figured it would go smoothly because their needs had been met. WRONG! Brittany cried the first 15minutes we were in the car. I questioned "what's wrong" endlessly, turned the radio up and tried to drown her out, and finally spotting a sucker the teller had given me earlier, had quietness. Maybe, I wouldn't mind hearing about this book Marie had suggested, "setting limits". All I can offer you is that I know where you are. They are teaching us and for that we have the lord to thank.

Hiya Marie!!
Yes, I have been pretty busy on this end too, but think of you guys all the time. I hope that you are feeling better soon and we get a chance to 'catch up'..till we 'chat' again..take care.
Luv, Tina

P.S. Give Jared an extra hug for us.. :)

hi tina been a few days since we talked, hope your doing ok and that we connect again soon. ive been fighting illness and havent been surfing the web to much but been thinking about you. take care hun:)

marie

lol Heather, i hear you on the behavior thing, it can be fustrating at times. I think impatience will happen time to time. A good book i found that helped was called setting limits ( i can try and find the info if you like) it requires the parents being extremely consistent 24 7 which isnt always easy but the book has been a hug help. hang in there, ok? give yourself a break too:) take care

marie

Tina, thanks for your kind words for Luke & myself. I really do enjoy all of you guys in the chat and one day we all may be able to all meet each other, wouldn't that be great!if we all could get together ,it would be like heaven on earth because we would be close to alot of little angels! hugs& kisses to ALL your children LINDA

Heather,
'Been there, done that...still there..doin' that a lot of the time.. :) please e-mail me ANYTIME...I always look for the positive, but sometimes need a little help findin' it myself..no judgement, no lecturin', just good ol' support here.. :)

Linda,
I love every chance I get to chat with you and share Luke..he sounds like such a character..a dear character at that.. :) hearing about him always makes me smile..they too, grow up VERY fast, huh? *hugs* Tina

Hi everyone! It's been a while since I've posted anything, which might be my problem: I have been SO frustrated with Nicholas (3 1/2) the last week. He has been doing everything in his power to do "no no's", and I have to tell him fifty+ times a day to do something or not to do something. I am going crazy, and I have been so impatient with him! Please lend me a hand full of support and advice, PLEASE!!!!!

Hi everyone! It's been a while since I've posted anything, which might be my problem: I have been SO frustrated with Nicholas (3 1/2) the last week. He has been doing everything in his power to do "no no's", and I have to tell him fifty+ times a day to do something or not to do something. I am going crazy, and I have been so impatient with him! Please lend me a hand full of support and advice, PLEASE!!!!!

I JUST WANTED TO SAY THANKS TO EVERYONE THAT GETS IN THE CHAT ROOM. YOU ALL HAVE BEEN SUCH A GREAT INSPIRATION TO ME. EVEN THOUGH LUKE IS 10YRS.OLD(PROBABLY OLDER THAN MOST KIDS IN THE CHAT) I STILL SOMETIMES FEEL LIKE I'M IN THIS THING BY MYSELF. IT SOMETIMES IS EVEN HARD TO LET ALL YOU FEELINGS OUT TO FAMILY MEMBERS. I GUESS IF SOMEONE HASN'T BEEN THOUGH SOME OF THE THINGS THAT WE HAVE GONE THROUGH WITH OUR CHILDREN IT'S HARD FOR THEM TO UNDERSTAND HOW WE AS PARENTS FEEL SOMETIMES.I SIT AND READ SOME OF THE THINGS YOU & YOUR KIDS HAVE GONE THROUGH AND THINGS SOME ARE GOING THROUGH NOW AND MY HEART GOES OUT TO ALL OF YOU AND I START TO FEEL VERY BLESSED THAT GOD HAS GIVEN LUKE TO ME AND EVEN THOUGH HE MAY HAVE GOT OFF TO A VERY ROUGH START IN HIS LIFE, HE'S HEALTHY,HAPPY AND THE SWEETEST LITTLE FELLOW YOU WOULD EVER WANT TO MEET! MAY GOD BLESS YOU AND KEEP YOU AND ALL YOUR LITTLE ONES SAFE IN HIS ARMS. THANKS AGAIN FOR BEING HERE FOR LUKE & ME I ALSO WOULD LOVE TO RECIEVE E-MAIL FROM ANYONE THAT WOULD LIKE TO MEET LINDA

to tina, stevie-maries mom and cindy, kaylees mom. vinson stayed over night when he had his t & a and ear tubes put in. the dr. advised it because so much goes on. like getting dehydrated and bleeding. he did fine but i'm glad he stayed over night because he did start running a fever. the soft foods we bought vinson wouldn't eat but he did go for a hamberger and fries. haha we were very lucky. you wouldn't of known he had surgery the dr.s and nurses were amazed at how well he did. i will be praying for stevie-marie and kaylee. marilyn

Has anyone had experience with their kids developing Alopecia?

Thanks Cindy,
The doctor said it probably would not be necessary for Stevie to stay the night, but it definitely depends on how things go..also because she does not have a heart-defect...or any of the major medical problems so common in Ds..(thank the Lord). I will REALLY stay on top of things though and will definitely insist on her staying if I get the slightest 'inkling' that she should. Somehow we know these things huh?? Best of luck to Kaylee also, I know it will be hard for her to understand..I know this because from our correspondence in the past, I know that Kaylee and Stevie-Marie seem to be alot alike..and almost the same age..both in kdgtn., etc. *hugs* and prayers to you guys...Tina

Tina-Great story! By the way, Kaylee's having the same surgery on March 2nd...we'll be glad to get it over with too. What did your doc say about an overnight stay? I consulted Dr. Len from DS health, and he said we should insist she stay the night. You can find the research at www.ds-health.com/abst/a9803.htm

We faxed the study to our ENT and are waiting to hear back from him about her staying overnight. I would rather not have to stay the night, but if there's more risk in just taking her home then we'll push for the overnighter. Dr. Len did say to make sure she is taking liquids WELL before they discharge her. I'm going to put something on the bulletin board for all you other parent to give us suggestions about what your child enjoyed eating and drinking after they had their tonsils out. Help us out here! :)

Good luck Stevei-Marie!

Good Day, all!!
Well, it seems Stevie-Marie will be joining the ranks of the tonsil-less, adenoid-less, and repeat ear tubed on March 7th.. I am looking forward to having it done so we can move along again...she has been so sick lately with the sore-throats and ear-aches, etc.
I also had to share something with you..regarding...comebacks..etc.During our visit to the ENT this morning the doc kept remarking at how "clever" Stevie was having 'downs' and all..and after the exam, during his consultation with me, I was asking if she would be required to stay overnight...due to her having "down's"..well, at this point, Stevie had evidently taken all she could of this and let out one heck of a GROWL...the doctor and I both turned toward her..and she THREW her lil arms straight up in the air and said, "UPS!!!!!" I had to laugh as this is what I have always told her and everyone else..Stevie has 'down's', but we call it , "UPS"...hillarious..you go girl..she will set this ol' world straight..one doctor, one person at a time..
Hope you are all having a good day and that I get a chance to chat with ya soon..Until then..you and ALL your little ones are in our prayers and on our minds.. ttfn..Tina

Tina and Toni, I loved your comments. I'm going to use the one from Toni, if the occasion arises:) We've got to be bold and in your face about our beautiful kids. It's time the world woke up and got a brain.(by the way, I'm pms-ing this morning:0 It's easy to be bold when you're walking in the pms shoes.

About the rude comments, thought I would share one with y'all. We were in a Wal-Mart, and the cashier looked at me and said "You're a better person than I am" - I didn't know what in the world she was talking about, I said "what?". She said "I was pregnant, and found out my baby was going to have Ds and I just had an abortion, there's no way I would have had a baby like that"! I just couldn't believe it! Ashleigh was still a baby when this happened, so I didn't say anything to her, I just left ( and cried!). I wish I could go back in time, there's alot I would say to her now! > Lisa H. - I need some of your boldness. I'm really glad you told that carnival worker what you did, and I had to laugh about what you wanted to tell that nurse - my thoughts exactly! I just need the guts to stand up to people - I think I'm slowly but surely getting it!!!!

Cindy/Brittany's mom,

We have the same situation as you do. Peter is 3 and still in our bed (most of the time) while his 2 month old sister is in their bedroom in the crib. He will sleep in his bed if we take him in there when he is already asleep. He transitioned into a toddler bed when he was 1, which worked well at the time because it was still in our room. Then when he was 2 we moved, he got his own room, and a twin size bed (with a rail of course). He started to sleep there but then something happened and he prefers our bed now. He is all over the bed also. He does not wake up when Shyla cries in the middle of the night so i know he can sleep in their room.

I guess I have given in too easily and allowed him to sleep with us too long. Mostly it was from when I was pregnant and my husband worked late. Peter likes to stay up late and I was so tired that the only way I could get him to sleep was to lay down with him in our bed. I am trying again to get him to fall asleep in his room. Little by little he is cooperating more. I just put a light switch in his room that he can reach so if he does wake up he can turn it on himself.

Sorry I don't have any answers, just keep persevering, as I will also.Good Luck. Keep us posted if you discover a successful method.

Cindy,

We have the same situation as you do. Peter is 3 and still in our bed (most of the time) while his 2 month old sister is in their bedroom in the crib. He will sleep in his bed if we take him in there when he is already asleep. He transitioned into a toddler bed when he was 1, which worked well at the time because it was still in our room. Then when he was 2 we moved, he got his own room, and a twin size bed (with a rail of course). He started to sleep there but then something happened and he prefers our bed now. He is all over the bed also. He does not wake up when Shyla cries in the middle of the night so i know he can sleep in their room.

I guess I have given in too easily and allowed him to sleep with us too long. Mostly it was from when I was pregnant and my husband worked late. Peter likes to stay up late and I was so tired that the only way I could get him to sleep was to lay down with him in our bed. I am trying again to get him to fall asleep in his room. Little by little he is cooperating more. I just put a light switch in his room that he can reach so if he does wake up he can turn it on himself.

Sorry I don't have any answers, just keep persevering, as I will also.Good Luck. Keep us posted if you discover a successful method.

I had a lady come to my door today to say, "Hi" from a guy running for office in our area. She saw Kaila and said that she always sees those kids at the mall and the people with them have so much patience. She went on to say that she felt so sorry for the kids etc... I told her that I felt sorry for all the people that abort these kids, because they are life's biggest joy. I then asked her to help in my prolife voter guide distribution, and she agreed to help!!! I couldn't believe it! Just wanted to share. I live in Oceanside Ca. if anyone would like to help me.

I am sorry but I have to get this off my chest... I heard from someone that parents are having plastic surgery done on their children with DS. I have a 5 month old with DS and I think this is awful... I truly can not understand why a parent would put their child through that...if it is because you are afraid other kids will make fun of them...every kid gets made fun of.. whether it is your color of hair, eyes, race anything...Kids can be cruel but why put your child through that because of what people may say or think... WHO CARES

To Cindy/Brittany's mom:

I just started getting my son, Danny(3 w/DS) into a toddler bed the other night. Fortunately, he has been sleeping in a crib in his own room, so we don't have that problem too. The toddler bed we got him has the rail on top and bottom and runs half way down the sides(Graco), so it gives him a sort of boundary to stay within. You could also put some pillows around the bed just in case she does roll off.

Last night I woke up in the middle of the night and checked on him. He was asleep on the floor in front of his bedroom door, which has a gate in front of it. I picked him up and put him back in his bed and he never woke up-poor kid-at least the floor is carpeted.

Anyway, take a look at the Graco bed. Hope this helps and Good Luck!

I just wanted to tell you all about a comment we got about Annie while waiting for a table at a restaurant. She was running around the area and an elderly man was also waiting. He said something about her being cute and then commented that maybe she would become president of the USA, someday. When I said "Oh, I don't think so" he made the comment that probably within her life time a woman would be president. I didn't know what to say. I think it's obvios she has Down syndrome, but I guess that day it wasn't so obvios.Or else his eye sight was going ! But how about that-- some with DS president? Got me to thinking "why not?" I don't want to start any controversies, I just thought it was a funny comment the old guy made.

Just a quick note; I was scanning tv and found a show on The Animal Planet "Breaking Through" about a ds boy and others who were understanding communication by means of dolphin therapy. Only saw last 20minutes, but was interesting.

I wanted to ask if anyone had suggestions on sleeping arrangements. My husband and I have a two bedroom apartment. Currently, Fletcher our son, who is one sleeps in the bedroom by himself in a crib and Brittany 3(DS) sleeps GUESS WHERE??? in our bed..Although I love her sleeping in our bed we really need to figure out some type of plan. She is all over the bed so I wondering how she could sleep on a tiny toddler bed. Also if she sleeps in the room as Fletcher when she wakes up, that means he has to get up. I thought about bunk beds, but he's really not big enough to come out of a crib. I could put a toddler bed beside our bed for her, but I would like to get her in the other bedroom. All I could think is to make one big bed for them both in the floor LOL. Any suggestions??

Hey everyone! I just posted some message on the board, I guess they're not the same. I was telling about how I've always been jealous about people with ds ever since I was little. I gotta go now, Buh bye! Love Alwayz, Jeanette

I have another story involving a young woman (30 @ that time) that I have worked with since long before I had my daughter. I took Rose to a carnival (she loves carnivals) and she wanted to ride the bumper cars, so we get the tickets and get in line. When we get up there, he carnival worker wrinkles up his face in distaste and says " you actually think she can operate it by herself?" (right in front of her. You should have seen the look on er face) I quietly told her to go pick a car and when she was out of earshot, I let him have it, I got in his face and told him "she has down sydrome, she's not stupid, and she's probably a hell of a lot smarter than you are." Then I went on to give him a dressing down he wouldn't soon forget. When Rose was done with her ride, I went and tracked down the carnival owner and reported the incident. He was very apologetic and gave her a handful of free ride tickets. She had a great time, but did not choose the bumper cars anymore that night.

I've only had a couple of comments that bothered me, and sadly, they were both from medical professionals (of course, most other people don"t realize she has ds unless we know them) Anyway, we were at te emergency room one night (one of many) and this nurse we had had once before, came in the room and in this really accusing tone says "she's a DOWNS, isn't she?" I wanted to say "no you stupid b____, she's a baby" but instead I said "well, she HAS downs" The baby wasn't even there for anything ds related......The other time, she was in the Childrens hospital with her 1st round of congestive heart failure and we were getting ready to be released, the head cardiologist (who deals with ds kids every day) asked if we had any questions. I asked if we needed to restrict her activities as she grew. and he told me "I wouldn't worry about it, kids with downs aren't active anyway, they don't play sports or anything" I was shocked! I just stood there with my mouth open thinking, "how ignorant can you be? and if they haven't been included in many organized sports in the past, it's been because of backward thinking people like you holding them back." I have since requested that he no longer be involvd with her care, and after relating this story to our regular cardiologist, I have his full cooperation on that request.

I actually had to laugh the other day at this lady's ignorance w/DS. I was in the A&P w/Michael (who is 4 but very small for his age -- he looks about 2) and there was a lady working there who was giving out samples of cereal. She offered some to Michael and I politely said that I didn't think he could manage chewing the cereal (he is being weaned from a feeding tube). So she looked at Mike w/his little glasses and said, "Oh, I'm sorry dear. I didn't see "it" right away. I had a brother who...who..." I said, "Did your brother have Down Syndrome?" She said, "Oh, no. He was born normal but had a convulsion after a few hours and became retarded. (which she pronounced, re-tawd-ed, she must be a New Yawka.) She went on to say how the doctors told her mother to put him in a "home" so, "she did put him in a home. You know, a place where they take care of all retards. He died when he was 27. Other retarded people there used to hit him so he was always very skittish. So honey, when I look at your son I have compassion." I HAD to laugh as we walked away! She told that horrible story and somehow felt she was conveying compassion!! A few years ago, I would have been crushed but things are different, and better, now. I forgive ignorant people as long as they're not trying to be mean!!!

Tina- Hi I made it through the test okay, now I have to wait another week to even find out if I can even have the treatment done. I hate waiting!!!! Brenda, Judi and anyone else who prayed for us I really appreciate it.

After feeding Stevie 3 waffles and a banana this morning he litterally layed on my feet and whined for half an hour for bread. What are you supposed to do. I finally couldn't take it anymore and gave in.

About the unkind comments. When Stevie was about 9 months old a store clerk said Oh he's a mongoloid baby isn't he? (Don't here that word anymore do you?) I just politely said no he has Down syndrome. That was the only unkind word I have ever heard. Stevie is just so social, he charms the pants off all adults.

Karen
In our county there is the 'special education co-operative that got us started with our daughter Stevie-Marie..Also, if you contact the local elementary school, I am sure they can lead you in the right direction. Hope this helps and best of luck..Tina

I have a son who will be 2 1/2 at the end of April, so we are supposed to be looking into preschools right now. we live in the Denver area, and I have no idea where to start. How do you find out which schools start children at 3 years old, and which ones don't without calling everyone in the phone book under "preschools"? Any suggestions would be greatly appreciated.

People are crazy,regarding the comment of pity to Tori! I'm still thinking how silly I was at McDonalds last weekend when I took my sweet niece for the first time on and outing and hoping that everybody thought that she was mine. I know I'm terrible! I know that I would have been shocked if someone had said an ignorant remark. However, as high as I was, I know that they would have wished that they'd have Kaila as theirs, as I do, by the time they left her presence. Feel it, know it and express the love that they have to offer all of us. They're an overflowing cup of God's joy and happiness and we have a part of that. Are we blessed or what!!!!

How 'bout this??
My ex-husband, after finding out that Stevie-Marie had down's..said, "oh, I am sorry!!" I said, "I know, that is why she is not yours!!!" I liked that one.. :)

Hey Patty,,,,,How about this come back.....When she said "How Pitiful" I could have said...."I'm sure he's thinking the same thing about you" LOL

I can't believe the comment that the women said to Toni about her precious Jeffery. We all have to come up with some creative language for comments like that. Let's all brainstorm and see what we come up with. We've got to stop this nonsence!

Toni: Boy, you've got more self control than I do. I'm afraid I woulda smacked her good. Tina (and everyone): About GPs...I've got a post down there about using both my GP and the specialists, but I had to tell you about my GP. He's a GP/OBGYN, so he also delivered Alex. I had a very hard time getting pregnant to begin with, and we knew this may be my only baby. She had no ds featres at birth, but, since she never cried and didn't suck well, we thought there might be some kind of problem. No one suspected ds. When we got the tests back (at 3 weeks) , this wonderful man broke the news of ds to us, he had tears streaming down his face. And he stayed in the room with us while I cried and wailed and absorbed the news. He told us that he would always be there for us whether it was medical or other stuff and he has been. Later on he told me that that telling me about the ds was the hardest thing he has ever done in his medical career. But he also loves and accepts her as we do, holds her, talks to her, brags on her, asks for pictures. He accepts my opinion, and researches what he doesn't know, then doesn't hesitate to send us on to a specialist if we need it. He truely is a friend, not just our DR. (And to top it all off, he's very good looking -hahahaha)

I've been reading your comments on facial features....and available surgeries.....Jeffery is 10 months....and obvious Down Syndrome.....no mistaking it......when they brought him to me at about 5 weeks......I had never seen a baby w/ Down Syndrome.....As I have watched him grow,,,his features b/c more obvious and more endearing.....I can't imagine putting him through a surgery,,,but I can understand where these parents are coming from........particularly if their child is very mild.......I was at the mall last month,,Jeffery was in his stroller,,,,smiling,,and kicking and enjoying the heck outta himself.....lol.....A woman walked up and looked at him and said,,,"How pitiful"....I was shocked, as most people who see him smile and want to hold him,,,,,,I said,,,"Actually, I think he is beautiful....His eyes are my favorite thing about him,,so full of life and expressions" It was better than smacking here in the face...........lol

Silly me..forgot to add that our pediatrician is a GP.. :)

Adrienne,
"happens all the time..LOL Stevie-Marie and I were in the grocery store not too long ago and a man said (to her) "Yer kinda big to be sittin' in the cart, ain't ya??" to which I responded...with a smile, a-course..."She is too big for me to carry.. and I am too 'old' (feeling) to chase her..LOL
The same thing happens with my other children also though..Cassie is 18 months old, but pretty small..(she is a preemie) and today at the doctor's office an elderly lady said..I didn't know that baby could walk.. LOL I told her she was 18 months old..and the lady was sooo sweet...the best is when you get some curious looks in Restraunts when you feed them a burger or something..cracks me up..

Brenda, and all
Thanks for the well-wishes..nothin real serious here..thank the Lord..but, Stevie still having some ear and throat problems so is being referred to an ENT on Monday..and Cass still has the 'bronchiolitus'..so, a new antibiotic for both of them and some steroids for the little one.. :)
A while back some of you were asking opinions on a GP (general practitioner) as opposed to a special needs Pediatrician. I sincerely wish EVERYONE could find a doc like ours.. :) She truly is the best..always listening to my opinion..heeding my 'motherly' instints and never jumping to the conclusion with Stevie-Marie that....it's just a "down's" thing.. :) She is absolutely terrific.. :)

Now, I am rambling, have missed you ALL and hope to get everything back down to a 'dull-roar' here soon so I can post (and read) more often.
hope all are feeling well, and have a fantastic weekend.. :)
*hugs*Tina

Denise, Have been thinking about you ALL day..scary, huh? Please let us know as soon as you can what you found out..I hope you finally got some answers..extra *hugs* to you and Stevie (and your dad for his support too..) I know this is hard on all of ya. :)

Boy I just have to say congratulations to all the mom's that are pregnant here! On the BB under amniocentisis, it is very apparent that there is alot of us pregnant again!!! Yeah to us all!

We were at the video store tonight, Regan, Russell and I and a lady assumed outloud to me that Russell must be an infant. She was trying to guess his age and thought he was so cute. I told he that he was 23 months and almost 2 yrs old. She was so shocked. She said "Oh my gosh". I guess she could have bet he was an infant. I told her that mentally he was only around 12 months old and then she felt sorry for me. (I was amused inside at all this) She actually then gave me a hug and blessed me like I was in trouble. I was flattered and took her hug. I thought it was very sweet of her. I have never had anyone felt sorry for us for our situation before. Most people embrace us but she looked concerned for Russell.

Does this stuff happen to you guys? It was an interesting moment! At least I got a laugh inside of me! Happy weekend y'all!!!

Hello everyone! On the subject of facial features, I just wanted to add my feelings. Our 3 month old Nicholas has DS and bilat cleft lip and palate. The lip (which is not connected at all, all the way up to the nose) and palate (the gum area where his two front teeth will come in is separate from the rest of his gum and is really crooked) is VERY obvious. We get alot of attention when we go out because they're twins, and we get one of two reactions: "They are so beautiful" (I too feel like they are just being polite) or "What's wrong with him?" (the only other reaction was a 3yo old boy at the pediatricians who was literally frightened away even after I explained that his lip was just broken and the Doctor's going to fix it). He is going to have upcoming lip repair next month and palate repair at 1 year. This is considered medically necessary because of feeding and speech/language development as well as sinus and ear problems. I have mixed emotions. On one hand, I can't wait for them to do the lip repair and even if it weren't medically necessary, I think we would probably have it done eventually. Both he and his brother smile now and his facial muscles aren't connected so you can barely see it on Nicholas. I can't wait to see a big smile on that cute little face! On the other hand, we are so used to the way he looks and we love him so much that we both laughed and agreed the other night that we're going to miss the way his lip is now. It's going to be a big adjustment to get used to his new look. We're taking alot of pictures now and even taking them tomorrow AM for professional pics. Personally, I would never bring him in for plastic surgery for his DS features, because those to me are minor and I think he's pretty cool the way he is. If other people have a problem, it's just that...their problem. I'm not against plastic surgery, though, and I think that if the child wants something done when they are OLD ENOUGH, then they should have the support of their parents. I don't know, I guess I really wanted to post here to maybe give another perspective. That's not for us, but I can certainly understand some of the feelings those parents might have. Thanks for listening!

Judi...Thanks for the comforting thoughts on school. I know that once he starts to go, I'll probably get used to it and I know he will enjoy himself. I thinks it's all the anticipation from now until then that will drive me crazy. He's having his transition meeting 3/31. After that they will decide what program will be better for him and then I will be going for my first visit to the school. I was actually going to see about applying for a job as a paraproffesional. Most schools need them and I would love working with other children as well as my own. My other 2 kids are in schiol all day, so I would have the time available. Sherri...It's nice to know that I will be going through the school thing at the same time as someone else. I wrote down your e-mail address so maybe we can write once school starts and compare experiences. You can write me anytime. I'm really surprised at the responses I've seen to the subject I brought up about changing the faces of DS children to lessen their features. I'm so glad to know that I am not alone on how angry it made me. I didn't actually see the program, but just hearing about it got me so upset. It is so important for us to accept our children as who they are, what they look like, no matter their differences. Everyone is different. Even our children without DS. My other son has ADHD and drives me absolutely crazy most of the time. He's more of a handful than My Eli. Sometimes HIS behavior is quite embarrassing, but we deal with our children and accept however they are because we love them. I'm glad to see so many parents that are in love with their angel's faces. I know I am! LOL Nicole

Hi everybody! Thought I would throw my 2 cents worth in on the "features" subject. Alex's features are very mild, also. Used to be, the only way anyone (even the professionals) could tell she had ds was with the blood test results. As she gets older (20 mo) people who have been around ds pick up on it, but no one else does. When I tell people they say "Are you sure?" [Yes] Then "how do you know? Then once they are covinced, they tell me that it must be very mild. I think everyone out there in the non-ds world think there is a direct link between features and functioning. To me that's like saying tall people are smarter than short, or people with blue eyes are smarter than those with brown. I guess it's up to us to teach the rest of the world.

Nicole: My boys turned 3 12/29, and started school 1/4. I went thru the same "emotional" stuff as we began talking about then actually beginning the "transition" process from ECI to school. I just didn't feel ready to put two tiny little 3 year olds on the school bus! However, like Sherri said, once we visited the classroom and I met the teachers and the aids and saw how easily they just made themselves at home and joined in the classes activities on the day we visited, started to put me at ease. I also talked to a couple of other parents and asked how they felt about the program and got all good reports. That helped too. The boys' school really loves parental involvement (kind of hard for us to do since we both have to work), but we were offered the choice to "volunteer" in the classroom once or twice a week. Maybe that's an option you can bring up w/your child's school and that way you won't feel like you'll miss any "firsts"? Now, the school bus thing.. that took some getting used to, for me! The boys absolutely ADORE riding the bus (I think they love it more than school!). The driver and the aid are just wonderful and the boys have already stolen their hearts. We wait at the end of our sidewalk for the bus to pick them up and as soon as they even hear it coming down the street, they get excited and jump up and down and wave. I think that's why I got over that quickly is because they love it so much.

Good afternoon!! Hope everyone is doing well today. It is very WINDY here today & I would suggest putting rocks in your pockets to step outside. We had a round of severe weather go thru last night with a few tornadoes. Can hardly wait for this weather season to start.

Judy: I glad to hear that all is well with Sam & Patrick. I think that taking a CPR class is a real good idea. I probably would have panicked. Where I live you can't dial 911, you have to dial directly to the police station in a town that is 14 miles away for them to send an ambulance. Hopefully someday our little rural community will have 911 access.

Brenda: Jared & I send a GREAT BIG GET WELL SOON WISH !!!

Kim: I also have been told that Jared is only mild Ds.What ever that means.I guess maybe they think that on odd days of the week he has full Ds & on even days of the week he has mild Ds. I do find it humorous!. By the way, has anyone ever been told not to worry that your child will grow out of the Ds as he gets older? I had a male friend of ours tell me that.

Nicole: Sounds like you & I are going to go thru the same things at about the same time. Jared will be 3 in August & will start school the week he turns 3. We just went up to the school today to visit the class rooms he will be in & to meet some of the teachers he will have. I am really excited about this transition. I am a stay at home mom & Jared is my one & only right now, so I am sure I will have some of the emotional things going on as this time gets closer. All the teachers loved him so much they wanted him to just stay. Jared started crying when we had to leave. He had a blast!!

Hope everyone has a great weekend!!

Since we are on the subject of features I have to say we too have had people not know that Russell has DS. The doctor's told us when Russell was born and as he got older that they can tell(because they are doctors) but Russell didn't have as prominent features as other DS babies. His face wasn't as flat and his ears were where they should be with being inline with his eyes. I have had other DS mom's not know he had DS also. I can see it being more prominent now that he is almost 2 but only when he laughs and tries to talk. But I do agree that we do get used to their features and love them for them. When we introduce Russell to people and they ask how old he is they get confused. Not many people can see it in Russell so I have the habit of introducing him as "This is Russell and he has DS". Friends laugh that I do this but when I ask people if they can tell, most say no. The only people I have met that have known right away are special needs teachers, pediatric nurses, dr's and PT's. Maybe other people don't know so they don't equate that something is different. Most people think Russell is a big 12 month old baby! LOL. That really makes me giggle.

And since Russell has been alive I have seen a documentary on TLC on the surgery thing for their facial features. The first time I watch, I could only handle 5-10 minutes and cried very hard through the hole thing. The little boy the parents wanted to "alter" was soo cute and only 3 yrs old or so and I couldn't understand why anyone would do that to a kid so beautiful already. Plus, to me, just because they alter his face, people will still know that he is different later when he talks and does activities so they should leave him alone and be proud of who he is!!! The second time I watched the same show I handled more of the show but still turned it off because my husband and I were getting mad!! If this is what others do, I can only understand becuase this is what they need to do, I just couldn't do it myself. I think our children DS or not are beautiful the way they are. (Oh I think my pregnancy hormones are coming out again! LOL) I better sign off now so I don't start crying again! LOL!

Have a great Friday everyone!

Oh, yeah, Judi, we get concerned over choking all the time. Glad you got the cantelope out!!!!

Adrienne

This is to Patty, I don't know how old your child is, but my son is 2 1/2 and when he was an infant, it was very hard to tell that he was DS, but as he got older the features did become more obvious. As his mom and the fact that we see him everyday, we don't really notice it because it becomes so unimportant. But I do notice it when I see pictures of him. I know other people see it more obviously now than they did when he was small. I know that it doesn't matter to you because you love your child just the way they are, but just a word of comfort, I have found that when people see my little boy, they smile at him like he is something veryspecial,which he is. I'm sure that you will encounter the same kindness from others. Some people say things they think you want to hear because sometimes people are so unsure how a parent of a child with DS is handling the situation, but it doesn't mean that they aren't sincere. I think that you will find that there are many wonderful people out there and that having a child with DS will introduce you to a whole new kind of great people. Best of luck to you and your family! On a seperate issue: My son is going to be starting school in September. He will have just turned 3 at the end of July. Though I am all for him being exposed to all the education and help that is available to him, I am already having terrible seperation anxiety! My other 2 children didn'y start school until they were 5 and I was emotionally ready for that. I have always stayed home with my children and seeing them off to their firstday of school is always emotional, but I am so not ready when they are only 3. Especially when even at 3 they seem even younger than that. I have always been there for their first everything. I'm so worried that I'm going to miss some very important first's and I'm afraid that it's going to make me feel very absent. I think he will do very well. He loves to be around other children and he adapts to new environments very well. I'm not worried about him at all at this point. It's ME that's having a hard time dealing with the idea of being away from him. For those of you have already gone through this, is it that bad? or am I wigging out for nothing?....Nicole

Good Friday Morning to you all! We had a little excitement in the Grossman household last evening. I was wrapping up the boys dinner, they were snacking on their dessert of Canteloupe when all of a sudden, Patrick decided not to chew his piece and swallow it whole. That's right, you got it, it got stuck. No air getting in. He panicked, I panicked, but managed to remember my baby CPR. He was turning a lovely shade of blue and fighting me tooth and nail as I was trying my darndest to get that chunk of melon out of his airway. When it didn't pop out after my first 5-6 efforts, I dialed 911 on the speakerphone in the kitchen. While on the phone I managed to get it partially dislodged, and could hear some "wheezing" and faint crying, but he remained still faintly "blue" in the face. About 1 minute before the ambulance arrived, I managed to get the whole thing out and boy did he let out a wail! A very happy sound indeed! By the time the paramedics came into the house, he was happy & smiling and told them "Hi!". They checked him over, proclaimed him OK, and then asked did I want him to go to the hosp. By this time, he squirmed away, proceeded to try open their bag they carried into the house then started chasing Sam around the room hollering at him. I declined the trip to the hosp. since I could see he was back to his same old self. Needless to say, it was very easy for me to see this morning why all my dreams last night involved hospitals, ambulances and the show ER. Think I'll sign up for a refresher CPR course while I'm at it!

Judi-Mom to Sam & Patrick (who's now a lovely shade of pink), 3, Identical Twins

Denise, Will definetly keep you and Stevie in my prayers, Actually youve never been out of them.Philadelphia,gives me cold chills just to think about it ,I went there once to see the big city and got lost when I lived in Running Mead NJ for a short time with my parents at the old age of 19. But then I'm just a small town girl from the hills of WV.

Nicole, My hubby and I watched the show after a freind called and told us it was on.It was awful I was sickened by it and Bill just got angry.Our Handsome Young Man Wont Be Having Any Surgeries.

Morning everyone Sooooo glad to see most everyones little ones are getting better,Happy Happy Happy .My prayers will stay with you.

Were all doing well today, The Flue decided to sweep through the house this past week but didn't stay long thank goodness hope it will just keep going and not get the two in the family it left alone, Matt N Austin, The whole house smells like Lysol and Clorox. NOT coming back if I have anything to do with it.

Tina been thinking of you everyday, Been busy with Mr. Flue and the greenhouse. Hope your all doing good.

I have a question to parents with older ds kids...

Does the ds features get more pronounced when the children grow up? Or,do they have them, or they don't? It really doesn't matter to us, we love our Kaila just the way God made her. I was just wondering if she will start looking more ds when she gets older. I think that she looks ds, but others have told me that they can't tell. I wonder if they are telling the truth just to make me feel better. If only they knew that I feel... These kids are a gift, and I feel proud to have been blessed with her.

Have a great day!!! Stay warm and dry. Patty

I was in the web site and even though i don't know anyone with Down Syndrome I thought that the site was cool and that it really informs people. I was doing a project for Child Development Class.

Hi everyone! Thanks for all your responses on the plastic surgery thing. I'm glad I wasn't alone in my feeling upset. I agree that altering a childs appearance would be much more traumatic for a six year old than being stared at. It might even be frightening. Their faces are so special. It's what let's people know that you were gifted with your own angel. When I walk through a grocery store, I walk with such pride. I want everyone to look at me. I just feel that my Eli was such a special gift and I want everyone to see how lucky I am. I have learned so much from my son that I never would have known, and he has filled a space in me that I didn't even know was empty. I was, of course, very fortunate that Eli was born very healthy and has no medical problems, which I'm sure makes things seem in a differnet prospective than parents that have to deal with health issues in their children with DS, but I'm sure that they don't cherish their children any less. It just must be very trying emotionally, and my prayers are with all the parents who must endure those fears. LOL....Nicole

This is to Kim,

I know exactly where you are coming from. i get that response all the time, "oh Jason's features are so slight he has hardly got downs at all" and i have the same reaction. i gigle and then explain. just thought you should know you are not alone.

have a great weekend everyone!!! Melissa

Hi Nicole, i dont think it was right either. how terrible to put a child through that as well. Someday in heaven i believe i will see my son as he should have been without DS, but for now i believe he is adorable and dont usually get weird looks about his appearance (maybe about behavior but thats another story haha!!) and hes 8. i would think it more traumatic for her to her her appearance altered than to have people look at her, and so what if they do? people have to deal with it and move on. i didnt see the show but hear about it thanks for sharing

marie

Hi every one i just thought i would stop in and let everyone know Oliver is doing GREATi am so glad he is having some awful nights tho doesnt want to sleep at all at night think he has his nights and his days mixed up but i started him on cereal lastnight was so cute how he was eating off a spoon like he was a pro was toooooooo cool lol well he is well health wise still doing GREAT he is weighing 11 lbs 8 oz so thats pretty good for being only 10 lbs 4 oz last week. Well i better get off here and get my behind in bed gotta get up early early in the morning and get to the torture chamber (DENTIST) it is beyond me to make appts at 8 am who in there right mind wants to get tortured that censored early in the morning well im rambiling on so im gone bye bye to you all i will pray for all of you and your babies as i havent had time to read many posts been busy being a mommy finally well gota jam like strawberry c-yas

Well HELLLLOOOOOOOOO.

It is Me, Me you say? Who in HADES?

It is ME, RO:) Remember me?

Been gone for a few days and thought I would pop in and see what is going on.:)

I see new faces and I wish to say HI!!

It is absolutely GORGEOUOS here:) NO SNOW!!!(I live in south Texas and we ain't had none all year)snicker snicker:).

Hey my thought on PLASTIC SURGERY:

At 6 years old will her face not be still changing? What I mean is as she grows won't the facial alteration change? With her size? What they changed today will always be changing. Will it be for the better in the end?

Hey how about OLIVER, and ADIEN and ANNA?

I am reading as fast as I can and I know I am missing something important:(

My thoughts and prayers are out there for everybody:)

I will keep reading RO:)

Hi Nicole I just read your post. I agree wholeheartedly with you. I do everything in my means to keep Olivia out of the hospital,it makes no sense to me. Did you see the Leeza show?It makes me cry to think that her parents care so much about how their kid's look when they could be spending time with their child and helping her to build a strong sense of self.Here's a thought for you. What if your child could have surgery so that there were no physical outward signs of ds?Here's my thought.Besides the fact that I think my daughter is the cutest in every way, I think that her physical signs of ds could be a big help to her when she's older. Let's say your child's an adult and they now have been through this surgery. What will others think of her when they speak or maybe do something kinda out there? I like the fact that there are many kind people out there in this world who will look at my girl and recognize she has ds.People are more patient,understanding, etc when they can recognize the outward signs. I've seen many kind people helping out the adults in malls, library etc. That's my thought. Just babbling now.Gotta go.

I wanted to say that I really enjoy this web site. I don't get to visit very often with my hectic life and schedule. I have 3 children, my youngest, Elijah has DS. He is 2 1/2. He had a therapy session this evening and his teacher was telling me that she watched "Dateline" last week and it was about DS. It was about this family that has a little girl with DS and they had her have plastic surgery to lessen her DS features. I was appalled!!! I wanted to know if anyone else saw the program and what they thought. These parents said they did it because they didn't like the way people looked at them. They wanted to be looked at as a whole family not a family with a child with DS. They also said they wanted her to have high self esteem. Personally, I think they did it for themselves. How can you look at your child for 6 years and ever want them to look any different? How can you look at them for that long and still even see the difference. I love my little boy so much that I couldn't imagine my life without him. Face and all! I take my little boy every where I go and he doesn't get weird looks. I don't get weird looks. I get smiles and people come up to me and him just like they do with my other two children. They say how cute, what a sweet smile, what a beautiful baby, or even you are a lucky mom. If we treat our children with DS just like we treat our other children or any child for that matter, if we love them and cherish them the way a parent should, there is no excuse why they should have a self esteem problem. This little girl wasn't deformed... It wasn't medically neccesary... and at 6 years old, I hardly think she already had a self esteem problem. To me, having a child with DS is a special privelege and it saddens me to hear when they are given to parents that are undeserving of that gift. I would really like to know what other people think about this whole thing. Nicole

Hi guys.... Just wanted to share a moment with you all. Today I had a lady come by to talk to me about RESP's and when Alli came into the room she was asking how old she was, etc. I told her that Alli had DS and she said" Oh wow, she must just be borderline Down Syndrome eh?" It was just such a strange thing to say that I started laughing and made her feel really stupid. I didn't mean to make her feel bad because she was genuinely interested in Alli, but After I stopped giggling at her I did apologize and filled her in a bit. Thought it was funny... anyhow maybe I'll see somebody in the chat room later.. Bye for now..KIM

Hi this is my 1st. time here. If anyone knows Kristen, that is pregnant (5months) Please ask her to keep staying with us in the chat room.Alot of people are worried about her. Thanks LINDA

Denise,
So glad to hear from you..have been thinking about you (and your upcoming angiogram) all week. You and Stevie are definitely in our prayers...keep us posted as soon as you can. *hugs* *hugs* and more *hugs*
Tina

Denise: Good luck tomorrow and I will certainly keep you and Stevie in my prayers. Make sure you post & tell us how everything goes. Judi

Hi everybody- I need to make a personal request. Can you all keep me in your prayers tomorrow? I'm having an angiogram in Philadelphia tomorrow to see if they can fix the problems that have been making me so sick lately. Can you keep stevie in your prayers too? He's just a little guy and he shouldn't have to have a mommy who's sick all the time. I really appreciate it, thanks.

Hello everyone. Just thought that this old mommy would stop by and say hello to all the new mommies and friends. I have been real busy with college and Its difficult to keep both going at the same time. I want to say Im still here and that I miss talking with everyone

Love Ya Bunches

Pam Kristal's mom

Hi All

I hope that every one is doing well.

I have been very busy working on Spencer's web site, and I wanted you all to know that I have now completed "Spencer's story part 2" and "Meet Spencer"

I have also posted "A message from a child" on the BB board.

Love to you all from Mary from U.K

Where was everyone today? Not alot of posts, missed everyone.

Russell had cataract surgery on both eyes when he was born. The eye doctor recently told me to try to keep his glasses on him as much as possible (I am really lazy at this). She keeps saying he can't see A THING without them and has told me in the past he is legally blind. I try to tell her he can see some but she says he can't. Well, she doesn't get to watch him like a did today. Boy can he spot a cheerio on the rug without his glasses and eat it!!!! LOL If that isn't using your blind eyes, I don't know what is!! Way to go Russell!!!

Good night everyone!!!

Adrienne

Hi. It has been awhile since i have posted. today is my son Fletcher's first birthday. hope i can get Brittany (DS) to sing happy birthday to him. She is at this imitative stage right now. I feel like they are just now growing up together because they are at such similar levels. She will be three in March and he is learning and trying to talk at such a fast pace. We had our testing all but the psychological test for preschool last week. I am really nervous about it. I know she will like it and will learn so much, but it is hard to turn them over to someone else even if just half a day. A cooment to Adrienne/Russell's mommy: I am not saying this to scare you. my daughter is missing two bottom teeth--they never came in. At 2years I took her to the dentist. She would not let him look in her mouth so he put her on this backboard and strapped her down from neck to ankles!!!! Terrifying for me and her. Not saying that everyone does it this way because I read the story about holding them in your lap and leaning them back. That was a very good dentist. Research dentists out there to find the right one if you have to take to severa different ones. my daughter also has tncare primary which limited her choice of dentist, but needless to say she won't be going back to that one. Anyway, things are going smooth otherwise. Hopefully, my husband and i will have our tax refund back in a couple of days and we can get a computer then I can check in regularly. hope everyone has a great week.

Well, you know when your hormones are kicking in due to being 7 weeks pregnant... I was on the "Your Story" part of unomas and I read through tons of stories. And I cried, and cried and cried and cried and cried! LOL! They were truly some wonderful stories and they obviously touched my heart!

Is there a problem with the chat room? It loads very slowly.

I didn't pass it along for good luck or good fortune, I passed it along cause I liked it ,

I hope you do to:)

>>"Heaven's Grocery Store"

>>

>>As I was walking down life's

>>highway many years ago

>>I came upon a sign that read

>>Heavens Grocery Store.

>>When I got a little closer

>>the doors swung open wide

>>And when I came to myself

>>I was standing inside.

>>I saw a host of angels.

>>They were standing everywhere

>>One handed me a basket and said

>>"My child shop with care."

>>Everything a human needed

>>was in that grocery store

>>And what you could not carry

>>you could come back for more.

>>First I got some Patience.

>>Love was in that same row.

>>Further down was Understanding,

>>you need that everywhere you go.

>>I got a box or two of Wisdom

>>and Faith a bag or two.

>>And Charity of course

>>I would need some of that too.

>>I couldn't miss the Holy Ghost

>>It was all over the place.

>>And then some Strength and Courage

>>to help me run this race.

>>My basket was getting full but

>>I remembered I needed Grace,

>>And then I chose Salvation for

>>Salvation was for free

>>I tried to get enough of that

>>to do for you and me.

>>Then I started to the counter

>>to pay my grocery bill,

>>For I thought I had everything

>>to do the Masters will.

>>As I went up the aisle I saw

>>Prayer and put that in,

>>For I knew when I stepped outside

>>I would run into sin.

>>Peace and Joy were plentiful,

>>the last things on the shelf.

>>Song and Praise were hanging near

>>so I just helped myself.

>>The I said to the angel "Now how much

>>do I owe?" He smiled and

>>said "Just take them everywhere you go."

>>Again I asked "Really now, How much do

>>I owe?" "My child" he said, "God

>>paid your bill a long time ago."

>>This has been sent to you with

>>love and for blessings. It originated

>>in the Netherlands and has been around

>>the world 9 times. The blessing has now

>>come to you and you will receive a good

>>blessing in the mail within six days of

>>receiving this letter providing you

>>sent it out to someone else. Do not

>>send money for this message has no

>>price. Do not keep this letter but send

>>it on to someone who needs a good blessing.

>>Send 5 copies within 90 hours of reading this

>>and see what happens in six days.

Ro

Hi Everyone!

I've not been able to post for a while...hubby was out of town for a couple of weeks and I was treading water - lol!

I guess you could say I'm still kinda new here so I'll reintroduce my family...me-Theresa, hubby-Brian, and our three girls, Brianna-9, Blake-7 and Brennan-4(Ds)

I just wanted to say hi and that I share in your joys and cry for your pains. What a range of emotions we can experience with each other. I wouldn't change the experience of "knowing" all of you because of my precious peanut for anything in the whole, whole world!!!!

Bye Bye for now,

Brennan's mom

I am so excited. My son Jared is 30 months old & we are in the process of transition into the school system. We had an informal meeting in our "home" with the Special Education Coordinator. It sound like they have ALOT to offer us when the time comes. We are going on Friday to take a tour of the class rooms that Jared will be in. She was even excited that Jared is using "Total Communication." It was so neat that she could come & meet us & Jared in his own environment.

I am new to this web site so I am not quite up to speed on everyone's feeding problems. I would like to mention that my son Jared was diagnosed lactose intolerant & was put on a special formula called Alimentum. I now have him on Westsoy Plus which is a soy milk. I know how frustrating feeding problems can be & I wish everyone well with this issue.

Debbie: Aren't children the best!! I just love how innocent & honest they are. This fast paced world we live in could learn a few things if it would just stop & listen to a child for just a moment.

Lisa: I am kinda new to this place too. I have not posted much but I do check in as much as I can. Keep us posted on how you & Alex are doing.

CHRISTINE - My daughter Jordan is 15 months old. When she was about four months old we found out that she had a very low score on her hearing test that was done right after she was born. (Why we weren't told about it sooner I will never know) Any way, at four months we had her hearing checked again. This time by a specialist. She did score very low on her left ear and normal on her right ear. We then had another type of test done which they attach electrodes to her head and checked the sound waves. It turned out that she could hear out of both ears but the canals of her left ear were so small that it was sort of blocking the sound. Well now at 15 months she can definitely hear. Just thought I'd share this with you. LEEANNE

I thought I would share a funny story with y'all. My little girl, Ashleigh (DS) is five and a half and I also have a little boy, Corey, who is three and a half. I have tried to talk very openly with Corey about the fact that Ashleigh has Down syndrome, because he has asked a couple of questions (about why she can't say something the correct way...) and he's really starting to notice alot of things, like how she makes more of a mess when she eats! So, the other night, we sat down and I tried to explain to him that Ashleigh has Down syndrome, and sometimes - she's just gonna need a little more help doing some things. We talked about the other three children in her class at school that also has Ds. After talking for a little while, I really thought he understood. Until he said "Mom, (pause) - Maybe you could go to the store and buy ME some Down Syndrome!!!"

I just wanted to post a note saying that thanks to all of you who post at this website and one other club for multiples with DS that I'm in, my little Nicholas is getting much better medical care than we would have been able to provide for him without you. I don't post often, but I check out the posts every day. We went to his cardiologist last week who said that he has alot of pulmonary edema that he feels might be due to aspirating his formula. I called them and his pediatrician today and asked about a swallow study,which nobody has ever mentioned to us, and they both agreed that it was a great idea. I also am waiting on a call back from the pediatrician about the enfamil AR. I was wondering, though, if the enfamil can be mixed to 24 cal/oz without any risk of kidney damage. Nicholas is on a high calorie diet. I also asked about vitamin supplements and was told that they have been shown in medical studies to cause peripheral neuropathy. Has anyone read any studies regarding this? I am did call on nutrivene and efalex for the information packets. I also am calling our ENT and asking about a brainstem hearing test which has never been done although the OAE? has come out negative on the left ear 3 times and Nicholas doesn't have much response to noises. Anyway, thank you so much for the information that you post...I wanted you to know how much I appreciate all your advice and hearing about your experiences. Thank you. Christine (mom of 3 month old Nicholas (DS) and Jason.

Lisa - welcome aboard!! It's a great site!

Patty, thanks for letting me see the rain in a different light! It was so beautifully put!! Happy Tuesday everyone.

Lately we've been having a lot of rain here in So. California . This morning it came to my mind, when I looked out and saw all the new green after the storm, that when seeds of faith are planted, then comes new growth.

Because of all the things I have on my plate at this time, and all the storms that we've endured, this really did help me. Love, Patty

Judy, Hi I was reading your post regarding Efalex. I too was considering giving it to my little one. But after reading about the seizures Im not going to, could you please let me where you found this information regarding the seizures. Thanks so much

Hi everyone! I just found this sight (only been online since x-mas) and I think it's just wonderful. I feel like I'm walking into a room full of friends. Anyway, just thought I would introduce mysef. My daughter, Alex, is 19 months and has downs. She has a heart defect and has had 2 open heart surgeries with several bouts of congestive heart failure between the surgeries. We have also fought her refusing to eat for about 6 months. She has been surviving (but not growing) on 2 cans of pediasure a day. We started the Nutrivene last Mon and Last tues she began eating. It was like a miracle. All this last week, she has been taking at least 3 cans of Pediasure daily, plus eating all kinds of food. She has ot,pt,speech,and developmental therapies (all in our home) Right now she is starting to cruise the furniture. Alex is the most beautiful little girl I have ever seen. I was worried about people accepting her when we first got the diagosis, but people stop me all the time just to tell me how beautiful she is. God, I must sound like a candidate for the "most biased mom" award. Sorry I've rambled on so. I'm sure you will all get to know us n time. I promise not to go on and on from now on.

Hi all: I just got back from sitting with my sweet angle, and since they have started thickeing his formula with rice cerel, he have not kept a feeding down since early this morning. He is on Losec for the acid, and then he takes a drug that is suspose to make his tummy empty faster so that it will not sit and come up on him. This, unfortunately, does not seem to be working. I am going to take a trip to the drug store and see if I can find the Enfomil AL, that a couple of people has spoken about. It sure cannot make it any worse for him, and worth a try. He had a wonderful surprise for Gram today, he is trying to sit up by himself, and doing a good job, I might add. Of course his Gram was really excited, and just happened to have her camera to catch this on film. I sure hope we can get this vomiting under control, as his oxygen is now down almost to a liter, which mean he will be able to come home sometime this week, if the other gets straingtened out. Thanks for all your support, what would I do without you. Lots of love and prayers are going out to each of you and your little ones, and please keep my sweet Aiden in yours. God does answer prayer. Love Mary & Aiden

Mary/Aiden's Gram, My son was on Enfamil AR like Diana's son. It is a great product...so easy to use and it really does the trick. Hardly any spitting up. You should check into it. It really may help.

Does anyone's child receive Music Therapy?

If so,is it beneficial and what is the focus. I guess What I am asking is for experiences and knowledge about music therapy. I'm thinking about asking for it for Peter soon. Thanks

Happy Monday! Well, here is Cypress, CA we have the day off from school! I take care of my girlfriend's kids so my daughter and her older girl are running me ragged. It is raining outside so they are stir crazy. They are singing to Britney Spears and Backstreet Boys (The girls are 6yrs and 5yrs so it is funny to watch)! Sidney the baby I watch has had a stomach viral thing since last Friday so she is pissy! But Russell, good ole Russell, he is happy and smiley like always. He is such a delight to watch! He loves when we do "Patty Cake"! We did it all weekend. He can do the clapping in the beginning and do the "throw it in the air" part. Sort of. He puts his hands up sometimes when you get to that part. And he laughs, and laughs and laughs!!!

I JUST WANT TO SAY THAT I AM VERY MOTIVATED WITH PEOPLE WHO HAVE DOWN SYNDROME. I KNOW SOME PEOPLE, ESPECIALLY KIDS THAT HAVE DOWN SYNDROME, GO THROUGH SOME TOUGH TIMES IN THEIR LIVES. I LOOK UP TO THEM.

Tina,

LOL, I hear you.CAN"T WIN FOR LOSIN'

Found this and thought I would post it.Sounded appropriate(sp).

~~friends are angels who lift us up to~~

our feet when our wings are having trouble

~~~~remembering how to fly !!!!!!!~~~~

Ro

Ro,
I hear ya... ;)
The 3 older girls had school, and Stevie-Marie didn't..they moaned and cried and Stevie got up BEGGIN' to go "L-i-i-i-i-de" (slide) with Wil-l-l-l-l-l....speech therapy -and my naggin'- startin' to pay off.. ;) Recess seems to hold little incentive for the older kids.. LOL
Have a great day , all..
Tina

Cindy,

I know that it is President day but we went today. Our county schools all went. We get out on the 28 and 29 for some reason:) All I know is when they have to go I fight to get them up and when they are out they are up at the crack of dawn:) I can't win for losin'.

RO:)

RO- Isn't it a holiday for your kids?? Are yours the only kids at school today? It's presidents day in Oregon!

Good Morning Uno Mas:)

I have thrown my kids from their beds (literally), and it is off to school.

It was easier today since baseball started practice:)

If you don't go to school you don't go to PRACTICE.

Neddless to say they fell over each other getting ready:)

Am I bad?:)

ro

p.s. anything that works:)

Just reading everyone's posts on chicken pox vaccine. I am a RN and work for our local health dept. in the immunization clinic. The vaccine is given after one year of age and at this time lifetime immunity is thought to occur. However it is not 100% effective, as no vaccine is. My daughter with ds recieved the vaccine after her first bithday and did have a reaction of about 5 pox. No fever and they did not blister. She was not considered contagious. From all my reading this is a good thing because it shows she has developed immunity. It is currently not mandatory in all states, but probaly will be soon. You may find it is cheeper at your local health dept. so check there. I believe all children should have this vaccine unless contraindicated by medical reasons. Even one death per year from this disease is too many. On a lighter side, Jessica is now 3 and has been in pre k for 5 months and is fully included and doing great!!!

Marie-where are you? I miss talking to you. Hope all is well!

Brenda-I really appreciate your prayers. I'd be more than happy to add Anna to my list.

Tina-Your heart is HUGE too!!!

Brenda,

This little girl,Anna, Has a great friend and let them know we will be thinking of and sending our prayers her way.

LOVE RO

Brenda,

This little girl,Anna, Has a great friend and let them know we will be thinking of and sending our prayers her way.

LOVE RO

Gosh, I was expecting my post to be above Steffi's post, looks funny above Brenda's. I am not a very religious person, but I will keep this little girl in my thoughts. I can't imagine anyone going through 8 heart surgeries. Loren

That is sooo cute! I guess you couldn't stay mad for long. Thanks for the chuckle. Loren

Hello everyone, I'm posting thih morning to ask for your prayers,Three weeks ago I ask you to pray for my best freinds son who had to have heart surgery, Well he's home now and doing well except can't get his BP regulated,While he was In ICU I met a family the Cooks who's daughter had just had her 8th heart sugery and was having a hard time but doing as well as could be expected, These parent's were great lending a hand when other parents needed a break and a shoulder for my freind Shari when she needed support.They are Christians and called Shari this morning asking for prayers.Anna is going down hill prity fast, it's not looking good,So could we all hold Anna and her parents in our prayers today please.

Thanks Brenda

Hi everyone. Happy Sunday!!I hafta tell you something very funny. This morning I found my 2 yr. old Olivia in the bathroom unrolling the toilet paper. My 3 yr. old had left the door open. I said to Olivia, you stop that right now. She looked up at me and said, "now, one doo, ree.(1,2,3 mom's interpretation)So I laughed and asked her Olivia will you count for me and once again she said one, doo, ree. She even held out her fingers . She's so darn cute.

Hey everyone,

I have been away for awhile and just read up on the post.

It is great to see all the news and I acually cried when I read about Aiden:) I didn't realize how close I actually held it:) I really was upset when it was first posted.

Oliver is another:) I just get tied up in all this and I really feel as if you are my extended family.:)

Tina,

I really enjoyed trying to chat the other night and I hope the kids get feeling better real soon:)Tell Stevie he has to share that chocolate cake :)

Ro

Yes, Brenda, your heart is in the right place..and also HUGE...thank you for the well wishes...Stevie-Marie's throat is better..Cass is still wheezing, but doin' pretty good..and Steve is lovin' his chocolate cake.. :)
*hugs* to you guys and especially lil' Billy..
Tina

Mary, Great news about Aiden!

Sorry for all the erro's, and bad spelling ,But my hearts in the right place, Brenda

Mary, GREAT NEWS,hope all keeps looking up.

Denise hope your feeling well today, Keeping you in my prayers

Elena soglad to here Oliversis out and feeling better,Hope they continue to get better and better.

Tina hope everyone is felling better today, AS always keeping you all in my prayers.

Welcome, Welcome, Welcome Toni this a wonderful site.

Melissa Billy takes the Nebulizer tretments and falls asleep prity often while taking them also.And to everyone else just so your not left out have a HAPPY DAY...Brenda

Judi -thank you for the info on Efalex. Makes me think twice before going out and wanting to try it. Mary Congratulations on Aiden's diagnosis. I pray all will go well for him. My son Bryce also had the reflux, but the dr. never seemed to concerned about it. He is one and a half it gets tiring cleaning up after him. Things have gotten better now that he is sitting and standing up along furniture. The dr.says he will out grow it. In the mean time I pray it isn't affecting his esophagous.

Mary/Aidens Gram My son also had reflux,he was on meds for it and it helped some but what really helped was a formula called enfamil AR (meaning added rice) it had the same consistancy as regular formula but when it hits the stomach it expands making it easier to keep down.It also has the same calories as regular formula and the good thing is you dont have to make the nipple any larger because of the thickining occuring after it hits the tummy.Just though this might be helpful to you.It sure worked for Jarrett.

Regarding the chicken pox stuff-

Kaylee and Emma both had it last summer. LOTS of chicken pox, and a few days of not feeling to well-but other then that it was a piece of cake. Lots of oatmeal baths and yummy popsicles and fun stuff to snack on. I think we watched movies for 3 days straight. Anways, Kaylee was 5 and Emma was 3. We did fine with it. Kaylee has DS (for those of you who don't know us)

To Mary- Yeah for Aiden, and for a second opinion! I'm sorry, but doesn't that just make you a little mad that they were misdiagnosing the poor guy?? We've had some problems lately with our doc, and when I read your story it sure makes me want to go out and get a second opinion!! So glad he's doing better-you are a great gramma to be so involved, on the internet, and providing support for the family. Don't stop!! :)

Greetings to all that are looking and searching for answers to our questions. I to rsearched for many years and spent many dollars. My son was diagnosed brain damaged at birth - he is now 7 yrs. old in a public school and a regular clas. I have seen so much work done DS children, and positive changes. The intellect, cognitive, manual skills -unbelievable. I took all my research and wanted to make it available to all parents to save time and money. I created two videos. One it titled Your child and ADD/ADHD - although this may not be your "label" don't let that fool you. We have doctors and specialist talking about structure determines function and nutrition for CBS expert. This tape can help all of us. (oh, for you out there with colic and reflux - a chiropractor specializing in children should be able to help you) The second tape is Programming the dysfunctional brain. We teach neurological developmental stages and neurological organization. Why the brain can and cannot perform certain tasks. Although the children are DS we can still tap into the unused portions of the brain and try and make more conenctions. Please check out my site www.addhope.com I'm not sure if both tapes are listed on my site yet, if not go to Amazon.com and look under their titles. Please remember so much new information is coiming down the road for us, so don't just accept what you are getting now, be willing to be open and explore. A diagnosis is only a beginning point and not the end. I believe "Never take hope away from anyone, it may be all they have left". Plese feel free to contact me researchpatty@ol.com I'm like you P.M.H.B. Professional Mother Human Being With Love, Hope and Peace Patty Sayih

Adrianne: I don't know the drug that they have been giving Aiden for his reflux, but I can find out from his mom the next time I am talkint to her. Probably, I will be going down to sit with him the first of the week, so can get the name of it then. I am so full of joy, and so hyped up, that I have not been able to settle down to go to bed yet. I will continue to keep you advised of his progress, and if I can be of some help to anyone, please feel free to contact me, even if you just need someone to talk to. You are a wonderful bunch of people, I will not forget you, Love from Aiden and Gram

Since we are still on the Chicken Pox thing I double checked Russell's vacination records. He did have the vacine at 12 months. He never had a reaction to it either. Like I said in the previous post my Dr. is highly against Russell getting it. I actually feel more reassured from you guys whos kids have had it already that have DS. It doesn't seem as bad as the Doc makes it out to be. I do know there can be complications though, else he wouldn't have brought it up.

Mary / Aiden's gram - Congrats on the good news! Wow, you have shed chronic reflux light to me. Since Russell has it. I am glad he is going to the GI doctor next month to make sure his esophogus and other parts are ok. What kind of meds is Aiden on? I know Propulsid didn't work. I am going to ask the DR about the surgery option and if it is for us.

Have a good weekend everyone!!! Adrienne

Hello! I was reading the posts about the chicken pox and I believe that you can ask for a titer, which is a test that shows the amount of immunity you have to the chicken pox. I had only a mild case when I was young and got a titer when I was pregnant because I work with children. Even though my mother said I only had about 5 pox, I did have an immunity to them, so it was okay. Hope this helps out! :)

My four month old daughter, Emily, has Down symdrome. My husband and I have been reading about the vitamin therapy for DS. We are uncertain whether to start Emily on this treatment or not. We have spoken to our Pediatrician and a Geneicist about this treatment and both were very vague in their opinions. Can anyone share their experience with us? Thank you Meredith & Lee Ford

Denise,
No, we did not see the Extra show tonight, but have watched one on the plastic surgery before...and actually even though it is VERY controversial...I had told Steve (my DH) that the only way I would EVER consider it would be if Stevie-Marie is very 'high-functioning' and no one gives her the time of day due to the obvious "downs" features..not at all because we are ashamed of her or trying to hide anything. My mind was soon made up to NEVER EVER put her through all that for any reason!! :) And as she gets older, it is also evident that when she wants to get her point across...heads WILL turn..LOL appearance or not.. :) Besides, to me (and I am VERY biased) the little ones I saw after the surgery looked just like Stevie-Marie does now.. :)
JMHO *hugs* Tina

Did anybody see the show on EXTRA tonite about the parents who got plastic surgery done on their 20 month old daughter Merideth who has Down syndrome. I just can't understand why any parent would do that to their child. It's not like her face is a mutation. And what kind of message is that sending to your child, that their not okay the way God made them.

Stevie also has the problem of always wanting to eat, never being full and flipping out if I won't feed him. It wasn't a problem when he was little but now he is starting to gain wait because of it. I just decided I had to be the mean mom and ration the food. It's in his best interest.

Marie-Just got out of the hospital again. Do you think it's ever going to end. Just 7 more days til I go to Philly for the angiogram. I hope I last that long. Have a good nite.

Amen...Amen...and Amen!!!! *hugs* to Aiden, Gram, and family..wonderful news..Have a terrific evening. Luv, Tina

Mary- What GREAT NEWS!!!! I can't believe everything Aiden and you all have had to go through to get this diagnosis. Congratulations! Loren

WONDERFUL NEWS: I just want to let everyone know that Aiden has a new Cardiac Dr., he did a test today that ruled out Primary Pulmonary Hypertension. Can you believe that all this is caused by severe Reflux, the formula has been coming up and going into his lungs requiring more oxygen, and putting a strain on his heart. I can hardly believe it, and after all the stress, mis-dignosis, God has come throught once again, I do believe that God hears our prayers, and I appreciate all the support and prayers that have come from this web site. You do not know how happy i am right now. All we have to do is start thicking his formula again, and he will be fine, along with some meds for the reflux. He will be able to come home sometime next week, as soon as they know that he is going to start putting on weight again, and the meds are doing their work. I cannot thank everyone enought, and Michiale, thank you for starting thiis web site, I don't know how I would have gotten through this difficult time without all the support I have received. Again, good health and lots of love to all of you and your families. Love Mary & Aiden

Hi.......I am interested in talking w/ any moms w/ Ds babies or toddlers.......I have a 10 month old....Please Email me at tmpuck@aol.com.....If you would like to chat...and help eachother out.....Thanks,,,,,,,Toni

I wanted to add something about chicken pox- children who have severely compromised immune systems can NOT be vaccinated and they are the one for whom chicken pox can be a life threatening illness. They are only protected when other children are vaccinated so they never become exposed. Luckily Julian had chicken pox when he was 18 months. He got a good case, he was completely covered, but he did fine. He had all his baby shots, but will have to wait until he off chemo for 6 months before he can get the rest.

Sherri: I also forgot to mention (however I think someone else did, a little further down), that it won't necessarily completely keep your child from getting chicken pox, but if they should contract it, it is, in most cases, a much, much milder case. No, they didn't have any bad reactions to getting the shot. So far we've been lucky that they haven't had any reactions to any of their vaccines. However, we did have to have a couple of their vaccines repeated, due to the fact that they had "Respigam" treatments (sort of a vaccine for RSV, usually only given to preemies & high risk children w/lung diseases). We received a warning letter to take to the Ped. saying that the Respigam may interfer w/certain vaccines that used live viruses (think varivax is one of them). So, just be be safe, we held off on the varivax for about 6 mos. and had one other repeated (can't remember, polio maybe?).

Here's an interesting tid-bit I learned the hard way about vaccines, when I enrolled the boys in school, I had to give them a copy of their shot record, well, I got a call from the school nurse about a week after they started school. Seems according to TX state law, the vaccine for MMR has to be given "on or after" their first birthday. S&P's b-day is 12/29 and they got their 1st MMR on, 12/21. So, another that had to be repeated, otherwise they would be able to come back to school. Check those records!!!!

Judi

Thank you to everyone who responded to my inquiry about the chicken pox. I appreciate the input. At this point I am not sure if its too late for the vacc. for Tiffany. I have to ask the doctor on Monday. The pox vacc is still new here and not covered under our health insurance (cost seventy dollars) it would be worth if it prevents her from getting them. I have always been one to keep them around kids who have them in thinking the sooner they get them the better. But I guess I will be change my thought process on that one. Again thank you all.

Judi

Thanks for your input. I was also curious if the boys had any reactions to the shot. Our pediatrician lead us to believe that Jared could have some spots, possibly fever ect. just like he had been exposed. She was also nice enough to run off a copy of information from one of her "BIG" books explaining pros & cons.

I told my husband after reading all the posts on chicken pox that I wondered if we needed to go ahead & get it done & quit putting if off. Like you said, it really is in their best interest.

Sherri: I guess there's been some controversy regarding the Varivax, chicken pox vaccine. My boys were 26.5 weeker preemies with very compromised immune systems. My rationale for giving them this vaccine was they already have a weakened immune system, and some other health issues. Besides, I know some people feel this is just "one of those childhood things that all kids have to get, but what they don't realize, is that a small percentage of children who have serious complications, even death, from having a case of the chicken pox. In that regard, it was a no-brainer for me to go ahead and have them take the shot. Any chance of complications was too big of a risk, IMHO. Hope this makes sense!

Judi

Ria & others - I have been researching Efalex, have been considering giving it to my boys. The only negative thing I've found is that it contains "Evening Primrose Oil" which has been found to induce seizures in some people. Other people swear by the stuff w/no side effects. Guess it's just one of those things, works great for some when it does, and doesn't for others when it doesn't! The seizure thing really is the only thing holding me back at this point. Good luck and if any of you find some other info, please share!

Judi

Kim got some questions about the EFALEX. Are there any side effects? What is this usually used for? My son Bryce is starting speech therapy and needs to learn to sign. He hasn't taken the initiative to do any himself but is starting to understand some sign. Would this help him out in anyway. Hi Tina, I was glad to read your intro. we have 2 kids Nicholas and Bryce(ds). He has been a great child as long as we can keep him healthy. To anyone: About the chicken pox: The doctor recommended giving the shot even though it isn't a cure. She said If Bryce went with out and had the chicken pox it could lead into other complications and also into pnemonia. So he has had the shot but has had little contact with anyone who has had the pox. The dr. said if he got the pox he wouldn't get such a severe case. Only time will tell.

I really feel alienated;:( all my post are coming off of the chatroom. It must be mad at me:)

Sherri,

I think it is the new TWILIGHT ZONE THING:)

It has to the tendences to "zuplicate" (adrienne:) things

RO

Sorry for all the same posts!! Guess I did something wrong.

Reading thru all the posts on chicken pox, I was curious if anyone's pediatrician has suggested that your child receive a chicken pox shot. In the state where I live it is now part of the required vaccinations. We have held off so far in giving it to Jared. He is only 30 months old right now and receives all his therapies at home. But I think that he is suppose to have it before he starts kindergarten. The doctor acted like it was only a 50% chance that he would not go ahead & get them if we gave him the shot & he was then exposed, so we thought why give it to him in the shot, especially when we have been so lucky to have him healthy this winter.

MELISSA - I have the same problem with Jordan. I will feed her and feed her and she never seems to get full. And if she someone else is eating she acts as if she's starving. I'm glad to hear she's not alone. I thought we just had a little piggy on our hands. LEEANNE

Melissa, Correction: I use it TO numb canker sores. Patty

HELLO!!!!! HELLO!!!!! HOW HAS EVERYONE BEEN??? WHAT HAVE I MISSED????? JOE MIKE AND BRIAN ARE JUST GETTING OVER RSV.....WHEEZING AND COUGHING ALL OF THE WONDERFULL THINGS THAT GO WITH THAT GREAT VIRUS!!!! ~MARIA~

Melissa, The oil of cloves will last you a life time. You only have to dab a little on a q-tip and put it on his thumb. I don't think he'll touch his thumb after you put it on, because the stuff is nasty! I've had a bottle for 7 years. I use it for numb canker sores. Patty

Adrienne and Tina.......enjoyed meeting you in chat last nite........before the room went whacky......lol....hope to catch you again

HAHAHAHAHAHA didnt work it all ran together i should of known that :) well Oliver is doing great home health nurse is coming tommorow at 9:00am to see how his insision is looking and will help me with his feeding and show me some easier ways to feed well gonna go to bed before "munchies" wakes up well goodnight to you all and i will pray for all your babies Nighty Night Elena

I was sent this through email and wanted to share it i thought it was pretty cool here goes::::::::::::: ------------------------------------------------------------------------------------------------------------------------ Someone Loves You S S S S S S S So So So So So So So Som Som Som Som Som Som Som Some Some Some Some Some Some Some Someo Someo Someo Someo Someo Someo Someon Someon Someon Someon Someon Someon Someone Someone Someone Someone Someone Someone Someone l Someone l Someone l Someone l Someone l Someone l Someone lo Someone lo Someone lo Someone lo Someone lo Someone lo Someone lov Someone lov Someone lov Someone lov Someone lov Someone lov Someone love Someone love Someone love Someone love Someone love Someone love Someone loves Someone loves Someone loves Someone loves Someone loves Someone loves Someone loves y Someone loves y Someone loves y Someone loves y Someone loves y Someone loves y Someone loves yo Someone loves yo Someone loves yo Someone loves yo Someone loves yo Someone loves yo Someone loves you Someone loves you Someone loves you Someone loves you Someone loves you Someone loves you Someone loves you Someone loves you! _____ | | | | | | | | | | | | |~~\\\_\~~~~~~~~~~~~~~~~~~~~~~~~~~/_ /// ~~| | \ o \_ ,XXXXX), _ / o | \ ~-. XXXXX`)))), .--~ |~~~~\ \~~~~~XXX' _/ ';))|~~~~~~~~/ / | \ \~~-- _\~\, ;;;\)__.---.~~~ / / ~-. `:;;/;; \ = _..-~~ ~-._ `'' /-~-~ `\ / / | , | | | ' / | \/; | ;; | `; . | |~~~-----...| | \ \ | /\~~--..._ | (| `\ __-\ | || \_ /~ | |) \~-' | | | \ ' | | \ : \ | | | | ) ( ) \ /; /\ | | |/ | | | | \ .' || | | | | ( | | | | \ \ | || o `.)| |`\\\\) | | | | | |~~~~~~~| Jesus loves you! Forward this to all your friends and share Christ's love

Melissa,

Nebulizer treatments?

When Teddy was around 7-8 yrs old he was taken the treatments 4 times a day.:(

Since Teddy came from a different state for visitations he had 2 different sets of doctors:( Not always the easiest thing in the world but we managed.

Teddy's doctor out in Alabama was trying several things on Teddy to help ease his problems.

Teddy had taken the treatments for a while using saline solution. Since we lived on the coast(salty air environment) our doctor took Teddy off the treatments and we were only suppose to use them after an asthma attack.

We never saw an asthma attack and his treatments never happened on his visitations.

As for falling asleep...... Teddy would get bored and tired of sitting cause it took so long and he would get irratated.

CHICKEN POX

Teddy had them 2 times if I can remember right. He did really very well with them. Just a regular case with the normal fever and the spots and the itching:(

I think I will have to look up the oil of garlic for Teddy so if you have used it post up and let us know if it works.

MONO,

I think with the topic of conversation right now (heart)you'll have plenty to ask your doctor leading up to the surgery:). Please just know that you all "3" are in our thoughts and prayers:)

Tina,

I know it was you who started the chatroom disturbance:)

Ro.

p.s. I hope to see you in there again real soon:)

Melissa,
I am experiencing the same thing with Cassie (Stevie-Marie's baby sister)-non Ds- with the breathing treatments not really helping alot yet, and she is on Ceclor too..I assume because of Stevie's strep. She has been on both since tuesday, and I also see little change yet..let us know if the doctor finds something else. Our pediatrician really is excellent and I am trying to be patient. I know these things take time. :) I hope he feels better soon. And on eating..LOL again Cassie..I swear, she sounds alot like Jason..(she is 18 months old) and just tonite ate two whole (little) bowls of mashed potatos and gravy and a bunch of brocoli and cauliflower..and wanted more..then she got upset when I ate a couple bites of mine. hehehe maybe a growing spurt..or we just cook that good..LOL :)

Marie,
It is not real un-common for a child to get the chicken pox twice, if they did not get it severely enough to build immunity the first time..and unfortunately the second time is worse..and it is also worse the older they are..this is the info from our doctor, and personal experience. anyway..Alicia, (our oldest) had them twice..hardly any the first time around and the second time at about age 10..when Stevie had them and she was miserable..so, I am from the 'old-school' way of thinking too...let them get it young, and get it over with.. :) without complications of course.. :)I hope your little ones just have typical cases..Paulette, and that will still keep ya hoppin'..been there, done that.. *hugs* Tina

In regards to the chicken pox posts, i know jared has had them twice which i found strange, once when he was six months and last christmas when he was 6. The first time was very mild but he was hospitalized for the 2nd time and they were severe in his throat on his tongue and all with high fever the whole time. hopefully that was it the poor kid was so sick:(

anyway that was my imput, feel free to respond if anyone wants to

marie

hello

in regards to the post form adrienne Russels mom, i had mono this past christmas if you would like info on it please email me. i would be happy to tell you the crappy details about it it is very hard on a body. you are run down allthe time your immune system is down an it is HIGHLY HIGHLY CONTAGIOUS..!!!! you will have no energy. it is so easy to catch.. just be careful k? Jaosn is going back to the docs on friday. i jut dont think he is getting any better. even after his breathin treatments. does anyone elses child fall asleep during there treatments? jason does like clock work he falls right to sleep, i wonder why. can anyone tell me ? or is it just a strange thing?

Also does anyones child have a problem with not ever getting full when they are eating? it seems that jason will eat all day long and all nite long if i let him. he will eat an adult size portion of food but he will cry if he sees any one else eat becasue he is hungry and he acts frantic.. and gets very upset. this is very strange to me.

Also has anyone else ever used (oil of cloves) to get there child to stop sucking there thumb? he is breaking the skin down on both of his thumbs.

and the doc said to buy it. itis 10. dollars per 1 ounce. isnt thst expensive??? thanks guys

just let me know if anyone has any suggestions or first hand experience!!!~ thanks

Melissa P.S.

sorry this was so long.

Ok, now that I look like a wierdo LOL!! Boy my computer was a mess. My messages weren't showing up like they usually do here on the message board so I kept posting again. I had to get off my computer and start my computer up again. Was it just me?!! Sorry to be repetitive! Boy did I feel lost. I thought they were all gone. Sorry and goodnight!

"zuplicate"..I like that one, Adrienne.. :)gonna soak in the tub..shhh..don't tell the little ones..I am goin' in alone...LOL hope to catch y'all tomorrow sometime..
g'nite... Tina

My last entry was in reference to the chatroom, Ro..yer quick at the posts there, darlin' and got ahead of me..LOL
Tina

Ok, something weird is going on. I posted something here earlier about chicken pox and MONO - wife having ds baby in April. I then went to the chat room where it was like the twilight zone. Our posts in there were in zuplicate. (tons of times. very weird) I then came back to post the odd happening and after I did that it didn't show up and my old post was gone too!!!!!!! Where did it all go. Whats going on. Very strange. Goodnight all!

I think so, Ro..all of a sudden older messages were repeating, and my new ones were not showing up.. couldn't have been me?? could it?? LOL
You don't have to answer that one..;)

Chicken Pox? Who has been kissing chickens this time:)

Hide the permo markers:) DOT TO DOTS are fun for the bigger kids:)

Ro

Is there a problem with the chatroom?

WOW!!! I was just on the chat and it started being really weird. I felt like I was in the Twilight Zone. My stuff would not show up, I kept doing it again. I then scrolled up to see someone else (tina? toni?) noticing the weirdness too!! But if you kept scrolling up, our chat posts were duplicated 10 times. (I might be exagerating LOL). Boy was that fun!! So, sorry to all, I was having fun and trying to answer the questions and keep up but it didn't work for me. I wasn't trying to be rude! But I did get a good laugh! Sorry to get out so quickly!

xoxo Adrienne

mono - Even though time can be trying for us with children w/DS, I truly believe we were given them from God for a reason. I didn't know what to expect over two years ago myself having found out before Russell was born but I now wouldn't change it for the world!!! Your time ahead may be challenging but it will also be very uplifting and fulfilling. Our children are truly amazing and wonderful! My heart goes out to you and your wife in the upcoming birth of your new son.

On the note of chicken pox, Regan nor Russell has ever had them but our pediatrician has always stated not to let Russell get them because their bodies can't handle it like other children. The Dr. said he could get very very sick and has always advised us to stay away from the Chicken Pox. I do not know how true this is. I don't question my Dr but I do come from the school of "Go ahead and expose my kids anytime, I would rather them get it overwith!". I have to now keep in mind what my Dr says before I subscribe to this way of thinking just in case. I don't know any DS kids that have had it so It's hard for me to put in perspective. Is Chicken Pox for DS kids That BAD? Good Topic!!!!

Friday is close! Happy Friday!

Hi Kim.....I am interested how EFALEX is taken (in a dropper? mixed with food?) Hi Paulette....My son had chicken pox when he was 9 months old (my daughter brought it home from school). He did fine..he was covered with pox! One thing I found helpful was washing him with Dial antibacterial bar soap in addition to an oatmeal bath. Not one poc? became infected. Good Luck! To everyone....I logged on to tell everyone about the Family Circle article which I just finsished reading and saw it was already posted here. It was a strange coincedense that I picked up this magazine as I don't buy magazines too often due to lack of time to read them. There was no mention of the article on the front cover. To my surprise when I brought it home and started thumbing through it, this great inspiring article was there! I hope you all enjoy reading it!

Paulette,
Stevie-Marie had the chicken pox at about 2 years old when one of the older girls brought them home from school. See what I get for teaching them to "share"? LOL. anyway, she did not have any more or less than the other girls...and all 4 of them went through it consecutively (Cass was not born yet.) My thoughts are definitely with ya.. Tina

Hello everyone just curious, has anyone experienced Chicken pox with their child with ds? My youngest one(non ds) has the chicken pox now. She is the first out of my 4 girls to get them. Tiffany is 12(ds) and has never had them. Many parents in my area of children with ds have not gone through the chicken pox yet. Just curious as to maybe they have more of an amunity to the Pox? Please let me know of your experience with them if they have had them. Thank you.

p.s. Becky the one with the pox is pretty upset about getting them because she has to miss school(the others can't wait to get them..lol) She has been running a fever and the majority of the spots are on her back, some around her neck and face. The itching hasn't really started yet, I gave her an oatmeal bath before bed anyway. I have a feeling with the four of them i will be seeing spots in my sleep! Bye for now.

Been a while since I visited. You may recall I found out several mos ago that my wife and I were pregnant with a ds son. Tough decision as to what to do. Well, my son will be born in April. He'll need heart surgery a few months later. Here we go.....

hey Denise i'm here. this computer has been acting up still and ive been sick this week, which hasnt been fun. jareds going to be home tomorrow so wish me luck!! haha hope your feeling ok , i'll give ya a ring on friday:)

hey tina, sorry we keep missing each other too. hope everyone is feeling better there, jared has been amazingly healthy this winter, keeping my fingers crossed!

talk to you guys later:):)

marie

hi again....... There sure has been alot of questions on Nutrivene and TNI lately. As a brand new mom, I was really looking into it,as I was grasping for any kind of straw to help Alli along. But I didn't decide to go with it, not for any specific reason, just my own decision. But I would like to tell you guys about what I have been using. It's called Efalex. It's a essential fatty acid supplement that promotes eye and brain developement. I get it from the health food store and I have to tell you that it is really making a difference. Alli seems alot more focused and clear. She has picked up alot more signs much more quickly than before the Efalex. It is just a concentrated fish oil, that is REALLY REALLY good for you and we don't seem to get enough of it.I've been waiting to tell about it because I wanted to see the results first, and I'm totally sure it has benefitted her.

Welcome Ria, Nice to see you here..have not used Nutrivene or any of the TNI stuff so cannot help you there..We have 5 daughters. Ages 14, 12, 10, 6(w/Ds),and 18 months. Stevie-Marie is in Kdgtn and doing rather well..she has more social-behavioral issues..(mainly stubborness--gets that from her daddy..;) .she is showing a great deal of improvement though..when she wants to..She is still my 'sunshine'..just gotta look through the clouds somedays.. :) Nice to meet you and your little one.
Tina

Hi I am new to this whole internet thing. I read many of your messages to one another and didn't know what to write or say. Let me start by saying my son has ds. He is one and a half years old. He has been fairly healthy. We have people coming in to help with alot of skills. We receive respite and we live in Iowa. I guess what I was wondering is if any of you know of any good sites with updated information on ds. I know about the nutrivene vitamin and even considered trying it but the doctors didn't have much to say about it. and I was concerned with the possible side affects or other health issues involved with it. It is tough to decide what to do especially when you read all the wonderful stories. but I believe that there are many who have gone without and had alot of other interventions and they to are very successful. sorry didn't mean to go off like this.

Zip a di do da.....Zip a di day......My oh my what a wonderful day....Plenty of sunshine heading our way....... Zip a di do da........ Zip a di day Everything seems to be working out for most here lately, Oliver comes home and respite is being given and just grand support.

It is just great:)

Ro

p.s. I heard Amy is doing a little better but still needs our prayers.:)

Here's something Casey (10) did this morning that cracked me up. I'm not sure if it's just a funny story to me or what but I just think that kid is a hoot!

This morning Casey was sorting through his valentines cards and picked one up that folded part way. He walked up to me and held the card out in front of him and flipped it open quickly. He yelled "Freeze! FBI. Don't move!" I started laughing and Casey took a look at the card a little closely. It was an NBA Basketball Valentine... so he changed his command to "Freeze! NBA! Don't move!"

Oh god, that kid cracks me up!

Hi guys... Just wanted to tell you that I had the supported child care worker come by today and I also qualified for respite care for Alli. And they are going to pay for her pre-school and have a whole bunch of services to offer to me,and Alliosn. Behavior management to help me with the potty-training is a blessing! Somebody else to do it?? OK!!!! Anyhow that's my great news!!

First off, Thank you Loren for your platelet help. I emailed you and asked more questions. You have peaked my interest in other avenues this problem may be.

Second - I went back to trying the scotch tape on Russell's lense on his glasses and he seems to be keeping them on, FINALLY. When we first started all this, the scotch tape thing didn't work. But now maybe he has gotten use to it. I need to be more persistant. Just so we don't have to do the arms wrapped in toilet paper rolls. This is a good thing!! And thanks to the opinions on the toilet paper rolls. It has helped put things in perspective for what I need to do for Russell. That doesn't mean I will do it, but it helps. LOL!

And for all of you that don't know about respite, they (the Regional Center) pays for a babysitter that you use so you can take a break. You have to qualify for it. I know California offers it, do other states??? I think all states should!

Have a great day everyone. Adrienne

Hi Annie, Yes, I'm sorry I forgot to mention that the article was in the March issue. I was so excited when I read the article that I felt I had to share with all of you. Thanks

Hello all, stevie's feeling better unfortunately I'm not yet. Marie-where are you? Are you under the weather now too. Give Jared a hug for me okay. Tina-Your support helps immensly. Thanks for finding the site for me. Adrienne-Congrats on getting your respite care. I know having chronic health problems myself that respite is invaluable to your sanity sometimes, enjoy. Elena-I thank God your little one is home to enjoy! Melissa_ I'm happy Jason didn't have to stay in the hospital. Stevie was hospitalized many many times as a little guy with croup. He still gets it at least once a winter. We just dig out the mini-neb machine now, works wonders. Hope Jason is feeling better soon.

First, Let me apologize in advance for the length of this. Trying to get caught up here, and sure don't mean to forget anybody..:).

Adrienne,
T.P. rolls on little Russell's elbows?? I agree, this does sound a little extreme, but I guess it depends on how important it is that he keep the eye patch on and how long he would need to be 'confined' in this way. I know these things can be so difficult to figure out..we sure don't want these little ones to feel 'punished' while doing what is (supposedly) in their best interest. I am sure you will come to some kind of acceptable compromise. Let us know how it works out. Oh, and congrats on Respite, not sure what that is, but you sure do deserve a break. ;).

Denise,
I hope that you are feeling some relief from your headaches. Thank you for the well wishes to me and mine. Is your Stevie feeling better? Sure hope it was just somethin' he ate. :)

Cindy,
*hugs* to you guys and Kaylee. :).

Aiden & family,
You guys have sure had your share lately...Please extend our support to the entire family, including the other little ones involved. Prayers and well wishes for answers are definitely coming your way.

Melissa,
I am so sorry that Jason is feeling under the weather again. Albuterol is great though..hopefully, he will be back to his 'old' self in no time. *hugs*

Dawn,
Branson's page(s) are adorable..thanks for sharing..both pages worked for me too. :)

Melissa,
Do not know about seizures (yet). My youngest has been having some sort also..neurologist is not sure what is going on yet..said something about 'benign' seizures, but no diagnosis is really possible until further MRI's are done for comparison due to her age...she is now 18 months..and does not have Ds, by the way. So, actually, I was also waiting for responses to your post. Thanks for the link, Loren, I will check it out also.

Stella,
Life is definitely too short for all the 'bickering'..and so am I..LOL

Amy O...
prayers, prayers, and more prayers for you and yours, darlin..and lots of *hugs* too.

Elena,
"Welcome Home, Oliver!!"

Karen,
Glad Caleb and Faith are feeling better. They are adorable! :)

Marie,
Sorry I keep missin' ya. Hope we get a chance to visit soon and that you all are well.

Ro,
Thanks so much for keeping on top of things..not sure how you do it..but am glad you do. :)

Once again, I am sure hoping I did not forget anyone..you are all on my mind..and thank you once again for the well wishes to my little ones also..only been one day on antibiotics so far, but 'slow and steady' wins the race, right??

Have a great day, talk to you all soon.

Very Sincerely Yours, Tina

P.S. Michelle Mc, if you get a chance to re-read my e-mail, I am sure you will see that my asking for certain things to be removed is not due to anything you have or have not deleted, but due to my attempt to cut corners and save time in linking certain photos...on the friend's board.. Totally MY 'bust' and I will re-post the entry as soon as I upload the pics to my own site...K? *hugs* and happy thoughts...to all. :)

Amy, Cindy, Elena, Mary, Melissa, Chris....

Keeping all of your little ones in prayer for health and comfort....

Ro, thank you for the Valentines Day wishes for Caleb and Faith!

Michelle-

You can find information about seizures on Dr. Len Leshin's website: ds-health.com You can e-mail him with questions. His own son has a seizure disorder so I'm sure he is especially knowledgable on this subject.

take care, Loren

To Mary Waid

Thanks for the info on the article in Family Circle. Is that in the current February issue or a previous one? I have a scrapbook of sorts where I cut out and collect newspaper and/or magazine articles on Down syndrome. Some are very encouraging and some are not so encouraging but I like to have a broad view on the subject. Thanks for the info on this article; I will surely look for it!

Annie

Seizures?

Michelle has asked about seizures and needs info.

Welcome Michelle

RO

WELCOME HOME ELENA AND OLIVER:)

Welcome back Linda:)

Melissa, I really am glad that Jason got to come home.

Amy,

Thanks to our friend :) You'll be in our prayers and thoughts

Adrienne,

What are you going to do with the FREE time:)

Hello Stella,

Welcome back Michelle Mc:) I hope you feel better after your break:)

But tell me did you really take a break and not worry about all your children here at Uno Mas?:)

Thanks again for the wonderful group you helped get together:)

Ro

WELL WE MADE IT HOME !!!! Oliver is on antibiotics for his pnemonia and was able to come home this evening I was so happy to bring my lil guy home been long long time since we have been here was just like when we got to bring him home for the first time after birth which was when he was 1 month old but very very big step for us Early Intervention came by his hospital room this morning and want to enroll him in i would like to know from parents who have there children in E I what its all about they kinda explained it a bit but what they said i can do myself but i would like someone to tell me first hand whats it about. So if anyone will please email me thanks Elena

There is an article in FAMILY CIRCLE that I thought some of you would love to read. The title of the article is Down Syndrome Doesn't Mean "I Can't" The stories are about four young adults who have DS and who have very successful stories. I think everyone will really enjoy reading this article. I know I did.

Our good friend Amy O., mom to Madison, is having some early labor contractions and some problems. Amy is not quite 20 weeks yet, so please keep her in your prayers!

Adrienne-

I posted to you before but it accidently got deleted. I wanted to let you know that my son was also born with a very low platlet count and they told me the same thing they told you, that it was unrelated to DS and was due to an incompatibility between our blood. I have since read that there are many hemotolgical abnormalities which are more common in newborns with DS, thrombocytopenia being one of them. Julian is my second child, neither my first nor third had this problem. Just thought I'd pass that on.

Take care, Loren

Well, I am so excited!!! I don't know how other states are but in California through Regional Center they offer Respite. "A break" of sorts. They told us in the past that we did not qualify so we never applied. I was a little upset that other people I know have it but I can't get it. I explained my chronic reflux problem to my regional center gal and she applied for me. WE GOT RESPITE. 10 HOURS A MONTH! I am soooo happy. I do need a break just like everyone else!!!

xoxox Adrienne

hello all I just thought i would let you know that things are going well

going well. Jason has croup. but was not placed in the hospital

he has nebulizer treatments 4 times per day. well i thought i would let you know. thanks for the emials . and for the thoughts.. it is appreciatted. Much Love Melissa & Jason.

Dear Michelle Mc, I just logged into UNOMAS after a week or so of absence. I am sorry to see there have been some issues this past week, again. The reason I have not visited this past week is because my posts were deleted due to the whole "book" issue (I won't even say the name now). I can understand deleting the posts that were negative (I didn't feel mine ever were, although some persons felt they were, so I expalined myself and I think there was a better understanding from the concerned persons). I was concerned that a post regarding another moms question to TNI was deleted. Maybe this was in error, but it did make me feel unwelcome here. I have been a part of UNOMAS since last year but do not post often. Our family bought UNOMAS Tshirts and love them. Your website has helped so many persons. I had asked for adoption info and received three responses that ending up saving an unborn baby's life..the information given to me here did that! Be proud of your site! Thank You, Linda ( I never post my email due to a virus we received last year).

Having read the messages - I can't believe what I see. This is, I presume, a website/support group for families of children/relatives with Down Syndrome? Why all the fighting then?

Share and support, don't bicker - life's too short!!

I am new to the chat room. I was wondering if anyone has had an experience with seizures with their child. My son had his first seizure at the age of six. I have little knowledge or experience with this. What if any was the outcome. The doctor is saying that he has a left side abnormality. I don't know what that means yet. He has an appointment with a neurologist on the 28th of this month. Thanks for taking the time to read and hopefully answer my questions\worries

Mel,

So sorry about Jason. Give him ((hugs)) from me and Branson and keep us posted on what the Dr. says.

Thanks Ro!

You got the link to work for the 2nd page? I can't get it to work! And I made it.:0) I am going to work on it more but have gotten sidetracked.

Hey Dawn Thanks for the e-mail on Bransons homepage:) It's great It made me smile:):):)

Here it is folks

http://www.geocities.com/dbacon66/Bransonspage.html?949762221850

Go see how precious. Click on the words under Pooh for some more pictures.

Ro

Hope everything goes well for Jason:)

To Mary, We are thinking of you and your family so please extend our concerns to the family.

Love Ro

well I just thought I would let you all know Tha Jason is sick and i am taking him to the dr.s I thinkhe has rsv or krupe(sp)? we will find out today.

he is very wheezy, and his cough sounds very high pitched like a seal.and his breathing sounds like he is having an asthma attack. I am very upset about this. he has been doing so well. I will keep you all posted... keep us in your thoughts today, Thanks. >melissa<

I am so sorry to hear about Aidan's diagnosis. I have been thinking about you a lot and worrying about that diagnosis. That was one of the diagnosis my son got as an infant, it turned out not to be, so I know about it. You and your family sound like increadible people. Take care, and I will continue to keep you in my thoughts.

Loren

Mary, Aiden, & Aiden's parents, I am praying for you.

Love, Dawn & Branson

Hi All: Just want to start by thanking everyone for their support over the last few weeks since I found this site. As most of you are aware, my sweet little Aiden had a lung biopsy last Monday, this showed that he does not have a lung disease as such. What he does have is a very rare disease called Primary Pulmonary Hypertension. It is so rare in children, that he is only the 4th case that they have had at Sick Childrens Hospital. The outlook is not good, none of the other children have survived longer than a few months. I guess it was really hard to dignose untill it was more pronounced. We expect him to be in hospital for awhile yet, as they have to make sure that he is at an oxygen level that will allow him to get enought oxygen from the lungs to the heart. We are trying to keep a positive outlook, and would ask that you continue to keep us in your thoughts. Lots of love and good health to all. Love Mary

Kaylee, I really like the bunk bed thing:) Hope you get to feeling better real soon:)

as for the surgery? Good luck:)

Ro

Dawn,

I really am sorry I got knocked off:( I would really like to talk to you again so look me up when your on:)

Love the Bran-man for me

thanks for the birthday greeting Patty, Ro, Denise and Adrienne. He ended up being kinda grumpy today but his party on sunday was great and the little stinker finally went to sleep (10:06) !!

Denise, sorry to hear you were back in the hospital and i hope stevie is feeling ok, how come hes throwing up? maybe there is something going around. i havent been feeling well either.

Tina, hope you guys start feeling better, geez only three healthy people left? hang in there u here? :) and yes jared did get his b-day card thanks so much

Cindy, i will keep kaylee in my prayers sounds like she isnt having a good time of it and i know your probably worried. why is it this time of year all the illnesses pop up?? must be that cold weather.

have a good evening all take care

marie

Just got back from the doctor. He really thinks we should take the tonsils out, and that will solver her problem. I sure hope so. Her tubes had also come out, so he will replace those at the same time. We're having the surgery March 2nd. I would really just like her to get really well in the next two weeks, so she doesn't have any type of infection going into the surgery. You guys all continue to pray for her, and any pre-op or post-op advice you have to give I'd appreciate. Thanks for your support and concern. Kaylee is such a great kid and has a terrific personality, but she's just been so sick for the past 8 months..getting strep 6 times..so it seems just when she is well for a week, she wakes up the next day sick again. I've done all I can, vitamins, acidopholus when she's on antibiotics, extra C, early to bed. Fruits and veggies. Prayer. Prayer. Prayer. So, now its the surgery. Uk, being a mom is tiresome and worrisome-but rewarding. Today she drew a picture on the easel of a ladder and top and bottom bed with pillows. Finally figured out she was talking about BUNK BEDS! pretty good! I guess she wants some!...

Toni, I know you have probably made you decision about TNI but you might want to look at sites that are not all pro-TNi before making a decision. We did try it for our daughter and found the most positive changes occured when she was taken off it. She now takes just a basic multi-vitamin for kids and is doing great. There are some big promises made by TNI promoters that have never been proven in any scientific study. I know many people will disagree with me but there are also many possible side effects of that treatment and no long term effects are known. I hope this doesn't just confuse you more.

Marie, sorry I'm late, I just got out of the hospital with another episode of severe pain and I came home to stevie vomiting all over my house. I just wanted to wish Jared a very HAPPY BIRTHDAY. Give him a big hug and kiss for me.

Steven-That was very very kind of you, thank you much:) (P) Tina-Hope your family is all feeling much better soon. It's no fun being sick. Give Stevie Marie and Cassie a hug for me. (P)Cindy-Hope kaylee is feeling much better soon. I'll be praying for her. (P)Elena- Sorry to hear that Oliver is in the hospital again. He's a tough little guy and I'm sure he'll be back home to his mommy soon. I'll keep him in my prayers.

Hi Toni - you probably have so many questions about TNI that I think it would be really helpful if you joined a Onelist group that can answer all your queries. If you go to www.onelist.com and search "Down syndrome" it should come up with a list of relevant sites. I recommend you join the "DSTNI" list as it is owned and run by Dixie Lawrence Tafoya who started Nutrivene-D. You'll get lots of great info regarding Nutrivene (messages come in Email form). Hope this helps you!!

Hi.......I would like to know what vitamins and/or nutritional suppliments you guys use for your little ones w/ DS....I have had Jeffery on Nutrivene for 2 months......I'm not sure if I really believe it works,,,,but at the time it seemed likea good idea nd I had no one to ask.....Jeffery is 10 months.....Whatdo you think of Nutrivene.......Is there anything else out there tht you would suggest??? I'm new here,,,and I know you all who have been here for a while are going through some difficult times,,,,,but I would appreciate it if you would take a minute to let me know what is working for you..........Thanks.......Toni and Jeffery

Hi there. Russell had an eye appt today which he has been having every two weeks since the doctor reconstructed his left pupil back in December. They have been wanting me to patch his right eye and then put his glasses on. It doesn't work well. He keeps pulling it off. The doctor today suggested I take toliet paper rolls and put them on his elbows and tape them so he can't bend his arms to get his glasses. I may sound too nice and nieve but this sounds soooo mean!!! I told the doctor I would think about it. Anyone every done this before??? Any other suggestions?

Happy Birthday Jared!!!

Have a great day everyone!!

should have clarified on my last post, that if and when I need another opinion on Stevie's strep..it will be from the same doctor..LOL I do trust her implicitly and that is a definite plus.. :)Didn't realize how that sounded until I re-read what I posted... :)Have a great evening..all..

Hi guys,
well, Stevie has strep (again) and her doctor does not seem extrememly concerned at this point, so I will see how this run of antibiotics does and how long she goes before contracting it again, before getting (yet) another opinion. I did call her school to tell them she would be out the rest of the week though and one of the aides mentioned an interesting fact. She said to get Stevie a new toothbrush..if she is re-using the same one that she used before when she had the strep she could be giving it back to herself. I always rinse her toothbrush in extrememly hot water (I am a bacteria-free-nut anyway) but maybe that is not enough..just one of the simple things that I never thought of.
At the same time, Cassie (18 mos) is diagnosed with astma, bronchiolitus and an ear infection, hubby just had 14 teeth extracted yesterday and it seems I have a case of pneumonia and 'tonsilitus' myself....when will the fun end?? on the bright side, there are still 3 relatively healthy bodies in the household that are old enough to help.
Elena,
I am so sorry to hear about little Oliver...he is definitely in our prayers..poor lil' guy. I hope they can get him home to stay soon, I know it is hard on you also. *hugs* to you all.
Cindy,
I am also praying that the ENT has some answers for you guys and little Kaylee...*hugs* and prayers to you guys also..hope to catch up with you all soon...and btw...
I echo Ro's sentiments...EXACTLY!!!!..enough already...PLEASE...

Cindy: I'll add Kaylee to my prayer list for sure! Poor little dumplin'! Hope the Doc can help. Judi

Elena- I am so sorry to hear that Oliver is back in the hospital. I will be thinking and praying for you tonight and that Olivers system gets strong and can recover quickly.

Please pray for Kaylee, anyone interested, she has a fever today, has been on meds for 6 days now and doesn't seem much better. Can't figure this out at all, and am quite worried. We see the ENT at 3:30, hoping he will help get her well. Her energy is low and her cheeks are red and she keeps telling me she's tired. God help her to get over this and not get worse. Thanks in advance for all your prayers.

I mean to step on no TOES here:)

I have been to the other site and I get just as much as I get here:)

The love and caring that everyone(including you) has given has helped me.

I consider Michelle Mc. and Michelle Harmon as my Friends:)

Friends argue and friends fight, they are only human.

p.s. could this be downslicker again?

I'll put my armour on just in case it is not. Please be easy on me if you are not downslicker:)

Now on to bigger and more serious concerns:)

Elena,

Please know that our prayers are with you and Oliver.

Keep us informed

Love Ro

Elena: I'm so sorry to hear about Oliver. He will be in my prayers that he gets better soon and comes home to you! I can totally relate, my boys spent 16 & 18 weeks in NICU when they were born. I wish there was someway I could help you, other than offering you my support and prayers! Judi

Hi to you all well my lil guy is back in the hospital again he got re admitted last night on Valentines day what a nightmare this has been well Drs dont know if his heart is swelling or what the prob is he does have pnemonia in his right lung and is having really high fevers of 103.7 was the highest so far well now his temp has been stable for a bit it is 99.1 so i am happy bought that well i must go for now and will try to get home as often as possible and update you all please send prayers please Thank you all and god bless you all and your Name: Mary Waid
Web Site:http://
Date: Tuesday, February 15, 2000 at 13:24:57
Comments:

Michelle, I'm sorry about that. Yes my email address at bopeep will also work. I think my son fixed the problem.

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Name: Patty
Web Site:http://
Date: Tuesday, February 15, 2000 at 12:21:56
Comments:

Happy birthday Jared!!! May your day be filled with many birthday blessings!

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Name: patty
Email:pattymm1@home.com
Web Site:http://
Date: Tuesday, February 15, 2000 at 10:48:46
Comments:

is this working?

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Name: marie
Web Site:http://
Date: Tuesday, February 15, 2000 at 10:22:17
Comments:

hehe thanks Tina and Ro!:)

today little cutie pie wanted to stay in bed, instead of going to school but off he went anyway. if i didnt feel so blah today i probably would have given him the day off but he got to celebrate on sunday sooo that was good.

hope you guys are doing ok still having some computer problems and have NO idea how to get to my email right now, hubby has a chore when he gets home haha!!>

have a good day hi also to Denise!!!

marie

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Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://
Date: Tuesday, February 15, 2000 at 07:08:42
Comments:

Happy Birthday, Jared.. :)
Marie,
I hope Jared got the b-day card I sent..
Talk to you soon...Luv, Tina

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Tuesday, February 15, 2000 at 06:28:32
Comments:

Happy Birthday to you..... Happy Birthday to you..... Happy Birthday dear JARED .....You look like a monkey you smell like one tooo....:)

Hugs and More Hugs>

Love Ro

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Name: Lorri Curto
Email:rlcs@pdq.net
Web Site:http://
Date: Monday, February 14, 2000 at 20:26:24
Comments:

Chris, Good luck during the level 2 ultrasound. You will be in my prayers. Reading your post sure brought back a lot of memories of the last few months. Just remember that even if your baby does turn out to have DS he is perfect in the eyes of God and believe it or not he'll be perfect in your eyes too as soon as you get your first look at him. I am thinking of you both and hope things go well. Lorri

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Name: Paulette
Email:schultst@hotmail.com
Web Site:http://
Date: Monday, February 14, 2000 at 18:23:27
Comments:

To Teresa/Jessica's mom: Hello neighbor! I am in Oshawa I have 4 daughters the oldest One Tiffany has d.s. If you would like to e-mail me sometime I would love to hear from you. I use to live in your area. (Omemee) actually. I do know of some people in your area not too many. Anyway hope to hear from you soon...Paulette.

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Name: Catriona Sillars
Web Site:http://
Date: Monday, February 14, 2000 at 17:15:51
Comments:

Elena

So glad that Oliver is well.Our thoughts and prayers have been with you all the time.

A big hug and lots of kisses to him from all in Scotland.

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Name: Cindy/Annie's mom
Email:stuchme@aol.com
Web Site:http://
Date: Monday, February 14, 2000 at 14:49:43
Comments:

To Chris & his wife. I just wanted to offer some words of encouragement, but I know that when in the situation you are in, many words of comfort seem to have no meaning. Whether or not your child has DS or not, your world has been turned upside down. I think the thing to remember is that the wild rush of emotions you & especially your pregnant wife are feeling are all normal helthy reactions, no matter how far out & unfamilar they may seem. Also try to remember that you are not alone. All of us w/ kids w/ DS have been through similar feelings, & I know of parents who were told of similar results that actully false. Their child was born healthy 7 dare I say ;normal', but the emotions were there all the same. I'd love to know how things turn out for you, but I also understand not everyone wants to share such personal things w/ the world. I have to force my husband to read postings that I think may be helpful to us. Visiting such a website just isn't for him. Best of luck to you all.

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Name: Loren
Email:salori@california.com
Web Site:http://
Date: Monday, February 14, 2000 at 14:38:40
Comments:

Lisa, I'm sorry. I got disconnected from the chat and had a hard time getting back on!! Hope to chat with you again sometime. Loren

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Name: TammyZ
Email:tzhe@mailcity.com
Web Site:http://pages.whowhere.lycos.com/lifestyle/zfamily/alexangel.html
Date: Monday, February 14, 2000 at 14:14:53
Comments:

I would like to offer my formal public appology to Mich. Mc. I do not feel that I was ever hateful towards her, but if this is the way it was perceived, then I owe her my appologies. She has asked me to go away, and that I will do now.

Thank you Ro, for the good wishes for Alex.

I would like to leave on a good note, so I have left Alex's dedication page above. If you choose to visit and wish to make a comment, please email me privately, or go to my homepage and sign the guestbook.

Sincerely, with love to you all,

Tammy

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Name: CHRIS MEYER
Web Site:http://
Date: Monday, February 14, 2000 at 14:05:53
Comments:

FIRST, THANKS TO CINDY AND LISA FOR THEIR INFORMATION.

FROM WHAT MY WIFE HAS TOLD ME, WE FIRST HAVE TO GO THROUGH COUNSELING FOR ABOUT AN HOUR, THEN THEY ARE GOING TO DO A LEVEL 2 ULTRA SOUND AND IF THAT LOOKS GOOD, THEY WONT EVEN DO THE AMNIOCENTISIS.

I WAS READING SOME INFORMATION (MESSAGE BOARD TYPE) ON SOMEOTHER SITE AND STARTED TO BALL LIKE A BABY. THIS IS SUCH A EXTREMELY HARD THING TO FACE. I NEVER IN A MILLION YEARS WOULD HAVE THOUGHT THIS COULD HAPPEN TO MY FAMILY, BUT THE JUST THE REALIZATION THAT IT CAN, HAS CHANGED MY PERCEPTION OF PEOPLE BORN WITH DISABILITIES.

MY HAT IS OFF TO ALL OF YOU THAT HAVE DEALT WITH THIS AND CONTINUE TO DO SO. I WILL TRY TO FIND STRENGTH IN THE FACT THAT OTHERS HAVE GONE THROUGH THIS AND SURRIVED.

AGAIN, THANKS TO CINDY AND LISA.

CHRISTOPHER MEYER

P.S. SORRY FOR ALL THE CAPS, I WASNT THINKING.

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Name: Lisa
Web Site:http://
Date: Monday, February 14, 2000 at 13:52:19
Comments:

Chris, I'm thinking of and praying for you and your wife too. First, don't assume your baby is Down syndrome--the AFP has such a high false positive! One more insight. When my baby, Paul, was 2 months old I went to a Down syndrome baby/toddler playgroup (really mostly a support group). There was a woman there with a 6 month old baby. She was adjusting, getting all of his therapies, moving through her life, etc. But she was still really depressed. It's natural to have ups and downs, but I felt so glad that I had gone through many of those really tough times before Paul was born. When he arrived, I was able to give my whole self to getting him all of the help and love I could, because I'd already dealt with many of the rough, raw emotions. Just something to think about. Good luck and God bless, Lisa

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Name: marie
Web Site:http://
Date: Monday, February 14, 2000 at 13:46:56
Comments:

hey thanks RO, think i can gab him for that hug as hes getting off the bus lol!:)

i cant believe i have an 8 year old geez where has the time gone???

hope your doing ok think i am getting myself the sniffles.

take care, you and your family, i have to find a place for all the stuff he got at his b-day party, even though tomorrow is his official b-day!!!

marie

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Name: Lisa
Email:lisajeanneret@yahoo.com
Web Site:http://
Date: Monday, February 14, 2000 at 13:46:08
Comments:

Chris, The amnio results take about 7-12 days. They grow the cells, so it can vary depending on how fast they grow. My office provided genetic counseling for us prior to taking the amnio, which answered all of our questions about heredity, etc. The VAST majority of trisomy 21 cases are not inherited (about 1 in 100 cases). They tell you that once you've had a baby with T21, your chances of having another are 1%--this is not because you have a genetic predisposition, but, (I was told) that the the woman may be "better" at carrying these babies (i.e., not having a miscarriage). I hope this helps!

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Name: Cindy
Email:scottcindy@jps.net
Web Site:http://www.jps.net/scottcindy
Date: Monday, February 14, 2000 at 13:44:24
Comments:

Chris-

It's very good to here from you again. I'm sure many others besides myself were thinking and praying for you and your wife. Regarding Down Syndrome, there are several forms-the most common being Trisomy 21-which is not genetically passed from the parent. They can do a blood test to determine which type it is. Our daughter has Trisomy 21. Please give your wife a hug and tell her our prayers are with her. I did not know about the DS when I was pregnant, and I'm sure it would have made for a very stressful and worrisome pregnancy. I'm sorry that you guys have to go through this difficulty, though I don't know you personally, it is very emotional. Just want to encourage you that 6 years down the road life is good, fun and our daughter Kaylee has really changed our out look on life. I'm sure you'll be posting the same encouragement in a few years, or even sooner. God Bless, and thanks for the quote! You certainly have a positive outlook on life, it seems, and that will be a blessing to your wife!

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Name: CHRIS MEYER
Email:chris_meyer@tx.acer.com
Name:
Date: Monday, February 14, 2000 at 12:56:12
Comments:

Hello again, I had originally posted a message on Saturday asking about the amniocentisis test that will be performed on my wife this Tuesday. She wanted me to find out a some additional information.

How long does it take to get the results of the test?

Is downs genetically related or just left up to God?

I passed on all the information I received from everyone and I thank you for the words of encouragement. I could tell that after speaking with my wife she was a little more comfortable with the possibility of our first child having Downs Syndrome. As far as letting our 9 year old know what may happen, we decided to wait until we know for sure before we try to explain it to him.

Again, thank you for all the support. You make it eaiser to deal with.

QUOTE:

TO THE WORLD YOU MAY JUST BE SOMEONE,

BUT TO SOMEONE YOU MAY JUST BE THE WORLD!

CHRIS

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Monday, February 14, 2000 at 12:31:48
Comments:

Happy Valentines Day to:

Ciarra,Alex, Lauren, Caleb, Faith, Sam, Patrick, Branson, Jason, Nicki, Emma, Harrison, Claudia,....

The list is endless so I hope no one gets offended when you don't see your name:) My memory is shot:)

We miss and still think of you and hope you have a very HAPPY VALENTINES DAY:) Love Ro

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Name: Kim (Allison's mom)
Web Site:http://
Date: Monday, February 14, 2000 at 12:16:53
Comments:

Happy Valentines Day EVERYONE!!!!!!!!

First of all I would like to say that I'm so happy to hear all the support happening again here, it's wonl. Second I would like to agree with michelle Mc. , you have to go with your instincts with what you feel is right for your child. Some people thought that it was way too early for me to put alli into pre-school, but it is exactly what she needed. She is 3 now after all, even though she is the size of a 1 and a half year old, and can't talk. I knew she was ready. I also knew that she is ready for potty-training even though she can't reach the toilet yet, she just needs a little help. Nobody knows our kids like we do, and therefore they have no right to judge what is best for them, even if they've gone to school for a bazillion courses and I've only got a grade 11 education. (I still think I'm smarter than most of them LOL) Just wanted to say that. And i'm glad to hear everybody's kids are doing so well!!!!!

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Monday, February 14, 2000 at 12:10:36
Comments:

Marie give Jared a Birthday hug( before he gets up):) from me and mine:)

>Ro

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Name: Michelle Mc
Web Site:http://
Date: Monday, February 14, 2000 at 12:02:23
Comments:

So anyway ... I decided to give the SDC class a try, mostly because of the class size. One Special Ed teacher, and two full time aides to a class of 10 kids. I finally had to admit to myself "Man. This is like private school. People pay alot of money to have a ratio like this for their kids." I felt it would help him stop withdrawing (hiding under the tables or desks) like he had in Kindergarten. The school agreed that I could change my decision at any time, so I gave it a go. I feel like it was the best decision I could have ever made. I stopped being suspicious of the school and thinking that they were making all recommendations to me simply on the basis of $$. I felt that they really did care about helping Casey learn and grow socially.

It has worked out great. I know I am lucky to have a great school and principal there. I do complain when I feel he is not given every chance to socialize with the entire school. At one time, the SDC ate lunch about 15 minutes earlier than all the other kids. That bugged me and said so. To my surprise, they said "you're right, we'll change that." I was like "Huh? Really? ok thanks."

Anyway, we are slowly increasing the time that Casey is mainstreamed. Someday, I really need to give some thought to whether I should try full mainstreaming again for him. But this is working so well, it's hard to see why I should change the plan. Kids know and play with Casey at school. They are very nice and he fits right in with them. He is writing (with alot of effort)and reading and doing additon and subtraction. I couldn't be happier.

What was my point? I guess just that you should do whatever your instinct tells you is best for Arnold. Always be open to making adjustments to your plan. Give your first instict a try, then stand back and evaluate how it's working. There is nothing wrong with switching to Plan B.

Well, I'm going to take a break from the computer now. Thank you a million times over for all the incredibly supportive messages and emails yesterday. It's been very good for my emotional state. I'm feeling much better about everything. Bye!

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Name: MichelleMc
Email:michelle@unomas21.com
Web Site:http://
Date: Monday, February 14, 2000 at 11:42:44
Comments:

Cindy, I was going to suggest that you get a second opinion but it sounds like you getting that already. I hope the new medication works for Kaylee. How long did you say this has been going on? Poor little thing. I've never had strep in my life, but I've heard that it's extremely painful.

Elena, I'm very glad to hear your son is released from the hospital and on the mend. That is great news and you sound thrilled to be home.

Mary - Arnold is taking the same educational path that Casey did. And I remember feeling all the guilt and same dilemmas and fears that you seem to be dealing with about it. I think there is always going to be self-doubt, no matter what choice we make ... we are always going to be worrying if we did the best for our child.

When Casey was five, I also felt pressure from the school district to put him in a "Special Class" on the regular school campus. I balked at that right from the very first suggestion of it. I was immediately reluctant about it. I went to observe the class and the teacher seemed great, but I still felt unhappy at the thought of him being there. I felt he had the right to be given a chance to attend a regular Kindergarten classroom with an aide.

I did have to be firm and state my reasons for why he needed an aide there. But I didn't have to "fight" to get them to agree. They tried to say there isn't money for that, but I knew Casey rights and stuck by my request. To my surprise, they said ok without too much resistance.

So Casey did go to mainstream Kindergarten, with an aide. He did ok and I'm glad I gave it a try, but he seemed to get lost in the crowd and withdraw in a class of 30 kids. I didn't think he was thriving in that arrangement. At his EIP before 1st grade, the school was great. They presented several options for Casey.. mainstream 1st grade with a partime aide. resource specialist pull-outs from a regular class, Special Day class with mainstreaming for a few hours per day. I could pick and choose what percentage of the day I wanted Casey there. They made their recommendations and I listened.

Oh my gosh, this long!

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Name: Tina
Web Site:http://
Date: Monday, February 14, 2000 at 11:18:49
Comments:

Loren,
You are absolutely right..I have heard this too. In fact, the last blood work-up Stevie-Marie had showed extrememly high strep-count and she tested negative for strep in the throat culture. I am not sure exactly what they do in that case, but it does seem that Stevie-Marie is the one harboring in the family and I will definitely have more questions for her Dr. when we go today..She has an appt. at 1:45 btw and I will let you all know if I get any more info. Also have to take the baby for severe asthma and respiratory difficulty (again)..at the same time. Wish me luck..and I will talk to you all real soon.
Love, Tina

---

Name: marie
Web Site:http://
Date: Monday, February 14, 2000 at 11:13:30
Comments:

Hi To RO, Denise and Tina and all!!!

To my son Jared, HAPPY 8TH B-DAY MY CUTIE PIE I LOVE YOU, DEVIL HORNS AND ALL!!!!!!

To Cindy, i am so sorry kaylee isnt feeling so well and i know its tough when they keep getting sick. hope the doc visit goes ok and i will keep her in my prayers. hang in there:)

happy valentines day all

marie

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Name: marie
Email:chiani72@hotmail.com
Web Site:http://
Date: Monday, February 14, 2000 at 11:09:47
Comments:

hello this is to Michelle with son Danny who is 7? if you would like please email me or post me here. having computer problems for the momment otherwise i would have just emailed you directly. my son jared will be 8 tomorrow and he has been having behavorial issues like the ones you described. if you would like to talk and compare "stories" so to speak let me know ok? thanks for sharing i know dealing with oppopsitional behavior is not easy i can relate. please take care

marie

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Monday, February 14, 2000 at 10:54:21
Comments:

Mary,Adien's Grandmer:)

PLEASE keep us posted on progress, We are thinking about you and yours.

Love Ro

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Name: Loren
Email:salori@california.com
Web Site:http://
Date: Monday, February 14, 2000 at 10:53:13
Comments:

I have heard that when a member of a family repeatedly gets strep that it is possible that another member may be harboring the bacteria but not having any symptoms, and therefore never gets treated. Loren

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Name: Brenda
Email:grhouse@cwv.net
Web Site:http://
Date: Monday, February 14, 2000 at 10:50:42
Comments:

HAPPY VALENTINES DAY EVERYONE

*BIG HUGS* To you ALL!!!HAVE A HAPPY HAPPY DAY!!!! BRENDA

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Name: cindy
Email:scottcindy@jps.net
Web Site:http://
Date: Monday, February 14, 2000 at 10:34:49
Comments:

Thanks for the encouragement about the strep, so sorry that ANYBODY has to get it, it's just not fun at all! Tina-hope that Stevie-Marie doesn't get it yet again. I talked to Scott's cousin last night, he's an Oncologist and very smart about these things. Said he's sure Kaylee must have penicillan reisistant strep and that I should request a non penicillan antibiotic. (He used a REAL big name for it, so I had him write it all down, and am taking this peice of paper along with all of Kaylee's medical records to the ENT!) Anyways, evidently it's important that they switch the Types of meds, and it seems my doc wasn't doing that.

As for the Nutrivene, when Kaylee was taking it we mixed it in yogurt (vanilla) and she liked it. good luck

---

Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://
Date: Monday, February 14, 2000 at 10:00:46
Comments:

Ro,
LOL, yes, I definitely like you. hehehe..and for the record, I am happily married....this week..LOL (jus' kiddin'...kinda) ;).
I hope this finds everyone feeling well..I also have to take Stevie-Marie back to the doctor..acts alot like strep again also. So, I know where you are coming from Cindy. If it is strep, this will be about the fourth time in 6 months. Talk to you all later.
Love, Tina

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Monday, February 14, 2000 at 09:38:21
Comments:

Aaaaaawwwwww.... Tina,

Where did you find this one:) He is a keeper huh:)

I sure hope you like me cause.......

Darling are you happily married?:)

LOL JUST KIDDING.

Thanks for all your support:)

A very happily married RO

---

Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Monday, February 14, 2000 at 09:00:24
Comments:

Debbie ,

Does the supplement need to be mixed into liquid?

What I am asking is can the powder be mixed into pudding or place gelatin in it to help make like a dessert out of it. Freeze it to make a slushy drink:) My kids like the idea that it is frozen more than they like the taste:(

For instance: they will not drink pedi-lite, YUCK, but they will eat pedi-pops. If you child likes popsiscles this might work by buying the molds to make your own.

I'm not sure about it but I had a brain surge (sometimes it is very dangerous) but thought I would share:)

LOVR RO

---

Name: Debbie
Email:purvis@axcs.net
Web Site:http://
Date: Monday, February 14, 2000 at 07:40:46
Comments:

Hello to all and Happy Valentine's Day! I just wanted to say to Michelle that I'm very sorry for all you're going through trying so hard to keep this site up and ruuning and getting alot of "slack" from alot of people. I've only been coming here for a couple of weeks, but I think the site is fantastic!!! Now on to my question. I have decided to start Ashleigh on Nutrivene-D vitamin supplements ( after months and countless hours of reading everything I could get my hands on about it!) But, now that I have FINALLY decided to do this, I can't hardly get her to take it! The taste is pretty awful, even though it says "new improved taste"! I would hate to have tasted the old kind! Anyway, Ashleigh is five and a half, and I have tried putting it in orange juice and pudding and applesauce and... It just doesn't dissove in juice (the Daily Supplement), it tends to just float on the top. So if any of you have your children on this and have any suggestions, they would be very much appreciated! Cindy, I will be praying for Kaylee. I remember those days when Ashleigh kept strep throat all the time. But, now, since she's had her tonsils out (March will be one year) she has never had it again!!! I don't think you can get strep throat once you have the tonsils out! Anyway, good luck tomorrow, I hope everything goes really good! Debbie Purvis

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Name: Diana (Jarrett's mom)
Web Site:http://
Date: Monday, February 14, 2000 at 04:20:40
Comments:

Michelle, Thank you very much for this site,I have been coming here for eight months now. This is the best site I have found for parents of children with DS,I dont get into chat often but I love coming here and hearing about other children and reading the stories. I think you have done a great job! I'm sorry you have recieved nasty comments,thats very unfair to you.Keep up the good work there are alot of us who would be very lost without this site. Thanks again Diana

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Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://
Date: Monday, February 14, 2000 at 01:19:24
Comments:

Cindy,
Prayers for Kaylee..you got it!! let us know what the ENT says on Tuesday, and (I know this is easier said than done), try not to worry too much..we are all right here for ya.
Love, Tina

Ro,
LOL, there's my 'positive'.. :)It is a VERY common saying I have..when trying to find some positive in every situation..'specially lately, can't seem to tell if I am comin' or goin' or "been there and went"..LOL

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Name: Ro
Email:rrboykin@academicplanet
Web Site:http://
Date: Monday, February 14, 2000 at 01:07:33
Comments:

Tina,

I read your post about the chat room and I have to say this:)...

I would love to be in 2 places at once:)

You have accomplished something everyone has tried to do for years.:)

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Name: Cindy again
Web Site:http://
Date: Monday, February 14, 2000 at 01:07:22
Comments:

Sorry about that. I hit enter by accident to soon. What I was doing, was trying to show what Michelle McIntosh's site was designed for, according to her front page. In my opinion, this site is her home. We are visiting it. When you are a visitor in someone's home, you're polite and kind and gracious. You wipe your feet before you come in. You say please and thank you. You don't demand anything, and are grateful for anything given. You follow the house rules. Period. End of story. Thanks Michelle McIntosh, for inviting us here and lending support and providing a safe atmosphere to learn and share experiences.

Everyone, please pray for Kaylee. She is having a really hard time with strep throat this time and can't seem to shake it. We have an appt with the ENT on Tuesday, but I'm just pretty worried and want her to be ok. Thanks for your support and advice everyone!

---

Name: Cindy
Email:scottcindy@jps.net
Web Site:http://www.jps.net/scottcindy
Date: Monday, February 14, 2000 at 01:00:43
Comments:

Uno Mas! Down Syndrome Online People with Down syndrome have "One More" #21 Chromosome! This site exists to celebrate the uniqueness of people with Down syndrome, and to offer support to new and expectant parents. Our goal is to help all families to share experience, advice and support. Above all else, we want you to have a good time while you are visiting our site. The activities listed below are the main attractions at Uno Mas:

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Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://
Date: Monday, February 14, 2000 at 00:31:07
Comments:

I was in the chatroom several times tonite..one of "me" is probably still there..LOL...could not keep a good connection..to all those who I may not have had a chance to answer..I am sorry, and hope to have better luck next time. Thank you for taking the time to visit with me tho'. I enjoy meeting each and everyone of you.

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Name: Tina
Web Site:http://
Date: Monday, February 14, 2000 at 00:21:21
Comments:

Happy Valentine's Day, evrybody...
Elena,
*gentle hugs* to you guys and Oliver..that is wonderful news!!
Ro,
No 'addy' (to send the valentines ) needed..'can feel the "love" from here...:)

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Name: Loren
Email:salori@california.com
Web Site:http://
Date: Monday, February 14, 2000 at 00:13:01
Comments:

Elena, I am so glad your nightmare ended happily. Oliver sounds increadibly strong, as do you. Take care, Loren

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Monday, February 14, 2000 at 00:07:19
Comments:

Hey EVERYBODY!!!!!!!!

Did you read the post from Elena?

OLIVER IS COMING HOME ON VALENTINES DAY

This great news Elena:) I am so glad that your little one is back.

Please keep us up to date when you can:)

Love Ro

p.s. dont squeeze to tight:)

---

Name: Cindy
Email:scottcindy@jps.net
Web Site:http://www.jps.net/scottcindy
Date: Monday, February 14, 2000 at 00:02:41
Comments:

Hey all- and Michelle McIntosh- I think many would agree that we're here for the long haul. It's your site, and you should do whatever you want to do. We will support your decision and move on.

Elena- SO HAPPY to hear that your son is coming home and you guys all get to be together for Valentines Day. Many here were praying for you and will continue to pray for your son. Please keep us posted..and have a great valentines..

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Name: HeatherF
Email:flanagan@mail.burgoyne.com
Name:
Date: Monday, February 14, 2000 at 00:02:08
Comments:

Congratulations Elena! Now you can move on with life, huh?! I'm glad that your son is doing well, heart surgery is awful to go through, but I am so glad that our children can go through it so they can live longer and more comfortably!! (sorry, I try to see the positives in situations!) My son, Nicholas, went through surgery at five months, and it was a very hard experience for all of us involved. How did you do two surgeries? I'm so glad that they were successful, I hope you will now get some better rest, and have a little less stress!

Love, HeatherF

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Sunday, February 13, 2000 at 23:54:00
Comments:

Mary W.

I have an excellent advocate here if you need any info I can get any law Texas has on special provisions available to you and yours:)

She has helped me on every special need my sister Lara( mentally challenged) has had.

The state would tell me NO and she would tell me YES. and Lara got what she needed:)

Advocates are great, and I'm learning:) One day at a time:)

Ro

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Name: Elena Hines
Email:ehines@echoweb.net
Name:
Date: Sunday, February 13, 2000 at 23:48:01
Comments:

Hi my lil baby boy was disharged this morning and we are now at my moms house we will be going home tommorow for Valintines day to spend with his daddy what a gift on valintines huh to have his son and his wife home I am very very grateful my baby is fine and doing so well they told me he needed to be on Oxegen for 6 months he kicked it he is no longer on Digoxin he is still on lasixs to get fluid from building around his heart for now he is only on tylanol with codiene and some motrin and reg tylanol the pain releivers are only as needed he has only needed it abit today so he is getting back to his lil self again smiles at you and coos he is truley my ANGEL he has made it down a hard hard path and i thank god for guiding him home to his family who love and care for him dearly i am so thankful for my son and i thank god everytime i think about my baby boy which is all the time lol i thank you all for taking the time to pray even though i didnt see any post i got the emails and i thank you all i really truely believe in the power of prayer thank you again and welcome to all the new parents and i am so excited to get to be a real mom again thanks again Elena

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Sunday, February 13, 2000 at 23:46:15
Comments:

I want to wish everybody a Happy Valentines Day.

I made sure to make a few out just for you:) but.....

I dont have any addresses:)

Love you all,RO

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Name: HeatherF
Email:flanagan@mail.burgoyne.com
Name:
Date: Sunday, February 13, 2000 at 23:11:43
Comments:

I don't know what I would do without this site. You truly are a Godsend to me, Michelle Mc. Thank you so much, from the bottom of my heart, for all that you do for UnoMas. My opinion (and it is strictly that) is that if people don't like the censoring, etc. they don't have to stay here. No one has to do what they don't want to! I truly would be lost without this site, and for what it's worth, I want you to know how much I love you and love what you have done for me and my family!!! :) :) :)

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Name: Amy
Email:ostertaga@aol.com
Web Site:http://
Date: Sunday, February 13, 2000 at 22:32:34
Comments:

I have found a lot of solace here, and know that when it went down I was willing to send money for a surprise gift to Michelle MC to help her out. This was the intention of the collection, this was the intention of my gift for her. She said the other day this was not a place to be one big "love fest" but to have a variety of opinions and feelings, but as someone may notice, she has removed many in the past few weeks that show other's feelings and thoughts that don't correspond with her own. Yes, vulgar stuff should be deleted...but you have shown a one-sided representation of what had happened. I have read your comments to those who were just trying to help, and was appalled....no one would know that side of you existed...and probably won't after this note is trashed. You can have your site, because when opinions other than your own are not allowed, that is what it has become...all your's and that is not accurate, not truthful representation. I prefer to find another site, where everything is not censored. Love to all, Amy

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Name: Pam Kristals Mom
Email:bcb75@yahoo.com
Web Site:http://
Date: Sunday, February 13, 2000 at 22:19:13
Comments:

Hey, their is no sense of being so hard on her we just felt that you might need some help from us. I for one agree to help you in any way I could. I love this Uno-Mas group and I felt like I was been rude for not helping you in any way possible to get Uno-Mas back up and running. Yes, we understand that it is a turmoil for you that was why we felt the need and urgency to help. Remember we are family and you are the one that helped bring us together. I thought that was what we were all about.

I have a mixed feeling from you letter. Please verify it for me. Do you want to keep the site or do you have mixed emotions about this? Please talk to us, because as I say we are family. Hugs to all. Pam

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Name: Michelle Harmon
Web Site:http://
Date: Sunday, February 13, 2000 at 22:18:12
Comments:

FOR THE PURPOSES OF CLARIFICATION...the email talking about money to help unomas out was sent as a means of trying to help keep a site alive that we had poured our hearts and souls into for months. It was in NO way meant to scamm anyone, nor was it done with Mich mcs permission. HOWEVER, it was done with the right intentions, by myself and collected by a dear friend. This person responded angrily to posts this weekend about calling local authorities and reporting as fraud our activities. When the things happened this weekend, we made several decisions...one...what to do with the money we had collected. IT WAS THIS PERSONS OPINION THAT WE SHOULD STILL FWD THE MONEY TO UNOMAS, AS THAT WAS WHAT IT WAS MEANT FOR. (RATHER THAN RETURNING IT TO PEOPLE.) THAT WAS A DECISION MADE OUT OF DECENCY, AND SUPPORT FOR A SITE WE HAVE BEEN BITTERLY HURT BY....oops had to start censoring again. ....

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Name: Shelly
Web Site:http://
Date: Sunday, February 13, 2000 at 21:50:43
Comments:

Oh, I forgot to add this. Make sure you wait until the day before I came up to tell Stevie Im coming. Otherwise you'll have him bugging you everyday until I get there! Im so glad to hear that Stevies teacher praises him so much. If only he could be that good at home! Tell him Shelly loves him and misses him!

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Name: Christine
Email:cabevizzo@netscape.net
Name:
Date: Sunday, February 13, 2000 at 21:45:48
Comments:

Oh, and Happy (10 month old) Birthday to Jeffrey!

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Name: For Denise
Web Site:http://
Date: Sunday, February 13, 2000 at 21:44:00
Comments:

I just wanted to let you know that after reading your recent postings on your current situation with Stevie, I really admire your gusto. Its not easy being faced with many problems at once. Just know that there are people out there that love you and will help you in any way possible. I love ya....See you on the 25th.

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Name: Christine
Email:cabevizzo@netscape.net
Name:
Date: Sunday, February 13, 2000 at 21:43:30
Comments:

Hello Toni, Congratulations on becoming a new mom! I'm a brand spankin new mom myself of 2 1/2 old month twins. Have you tried diluting the juice so it's not so sweet or taking the chill off of it? Maybe it's a flavor he doesn't like? Or maybe does he have a stuffy nose or lung congestion? How has his output been? That's all I could think of that might be doing it. Good luck! Let us know how he does. :)

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Name: Toni
Email:tmpuck@aol.com
Web Site:http://
Date: Sunday, February 13, 2000 at 20:08:36
Comments:

Hi,,,,,,I'm Jeffery's foster mom......soon to be mom......I'm having trouble w/ Jeffery not wanting to suck juice from a bottle....He is 10 months old today......lol........I bought a siipy cup,,but he won't even try that....he cries and spits........i'm not abel to get any juice in him......he is eating baby food well, and at the suggestion on a friend, Iv'e started giving him some texture in his food,,,,,cheerios, cooked veges,,,,and he is accepting those....Any suggestions about the juice situation? Should I continue trying to get him to take the juice or just try again later? Thanks........Toni.......PS.....I love this site,,,,,Michelle mc......You are some lady!!!!!!

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Name: Lauren
Web Site:http://
Date: Sunday, February 13, 2000 at 19:09:13
Comments:

Thank you all for your input on the problem I am having with my son taking his diaper off. You had some great suggestions that I am going to try out tomorrow! I think they will be a big help. Luckily, the poop hasn't made it to his hair yet-now that would be real messy!

Thanks again!!Happy Valentine's Day to all!

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Name: Lisa
Web Site:http://
Date: Sunday, February 13, 2000 at 17:56:09
Comments:

Loren, Chris, and Brennan's mom, I'm new to this site, but I found out at around 19 weeks that my son would have Down Syndrome. Paul is now 7 months old and very healthy. My AFP put my risk at 1 in 22, and a woman my age (32) would normally have around a 1 in 800 chance of having a child with Down syndrome. I decided to have the amnio because I didn't want my baby to come into this world in the midst of tears, sorrow and mourning. I wanted to get that out of the way before his arrival. I'm so happy that I did it that way. We were able to contact Early Intervention, choose our therapists, contact the lactation consultant in the hospital, meet many families with children with Down syndrome, and do a lot of research. Everyone is different, but for us this was truly a blessing to be able to prepare in this way. As far as my ultrasounds go (I had MANY--every week after that), there was only one soft indicator of Down syndrome--a short femur bone. No thickening of the neck, no dilated kidneys, no heart problems (as determined by a fetal echocardiogram), etc. If I had relied on the ultrasound, we would have never suspected Down syndrome. Chris, I wish you the best as you make your decision in whether to find out. No one way is right for everyone. I know we needed information and it gave us a sense of control to prepare. I'm blessed that Paul is progressing so well and is so healthy. Good luck, Lisa

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Sunday, February 13, 2000 at 17:30:37
Comments:

HAPPY BIRTHDAY ALISON

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Name: Tina
Web Site:http://
Date: Sunday, February 13, 2000 at 16:54:35
Comments:

Awww...ain't he great?? everybody meet my wonderful hubby, Steve.
Love ya, darlin.. :)

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Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://
Date: Sunday, February 13, 2000 at 16:51:52
Comments:

Welcome Michelle,
Our daughter Stevie~Marie is 6 years old and we deal with some behavioral issues also..Mostly with her being stubborn and telling us no. I too, have tried several different methods of correction, and have found that I can actually 'reason' with her somewhat...for instance, in our case, if she tells me no, I tell her no...no tape, no cookie...etc..then I explain why I said no..she does not like me to say no, so now when she tells me no, I remind her by asking if she wants me to say no to her..she will then grin..so sheepishly, and give me a big hug as if to say.."I was only kiddin', Mama." I love it. I don't know if reasoning works and it sure takes alot of time and patience sometimes, but she sure understands..persistance is also important..I never go back on what I say. If I have said no tape, she cannot watch a tape no matter how cute she is..we find something else to do, but no tape..hope this helps some. I know it can be difficult sometimes. We have 5 girls and Stevie is #4, and we correct and praise her about the same as the others..she actually seems to appreciate the 'normal' treatment..just one of the guys. Welcome to our little 'group', so glad to see you here.
Tina

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Name: STEVE TINAS hubby
Email:broncomag7@yahoo.com
Web Site:http://
Date: Sunday, February 13, 2000 at 16:51:49
Comments:

To Denise, Dont give up hope there are good men out there,and one will come your way. I too was sad to hear your situation,I just can not understand how someone can not love there own kid nomatter what! I only know you by my wife reading me the post and I thing that you are quite a lady.If we can help lets us know. Thank you STEVEN.

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Name: michelle
Email:sir@brez.junglelink.co.uk
Name:
Date: Sunday, February 13, 2000 at 15:04:16
Comments:

Hi we are a family of 7. Me and my husband, 4 boys and 1 girl. We have a little boy with Down Syndrome who is 7 years old. All my children are the apple of our eyes but just lately we have been experiencing difficulties with Dannys behaviour. He tends to hit out at people and totally wreck things. I would love to hear from anyone who is having the same problems as us. Danny has a lovely nature and he usually loves to share things but just lately he doesnt want to know. Ive tried every punishment I know but nothing is working at present. If anyone would like to help my email is sir@brez.junglelink.co.uk. Any help would be grateful. Thank you

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Name: Mary Waid
Web Site:http://
Date: Sunday, February 13, 2000 at 14:42:23
Comments:

First of all Ro.... Thanks for your advice...I will demand and by the way I'm from Texas also (Austin)

Lauren and Brennan's Mom...I found myself laughing when I read your posts. I have a 4 year old son who just spent the last 2 years in our PPCD program(Pre-school Program for Children with Disabilites) working with his physical therapist on trying to get him to zip and unzip his own jacket and back-pack. As a matter of fact this is one of the reasons they gave me as to why he should go to a self contained classroom. I'm sure at times it must be a pain to have to dress and re-dress your children all the time, but just think when they are old enough to go to school they won't have to spend all their time learning how to do that...who knows, maybe they can teach children like my son how it's done ( Seeing that his therapist can't seem to do it) Ha!HA! You have a great Sunday.

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Name: steff
Email:jefftixx@aol.com
Web Site:http://
Date: Sunday, February 13, 2000 at 14:26:21
Comments:

Happy Sunday everyone. It's a rainy Sunday in L.A. I love it!!!A perfect excuse to do nothing all day...Ahhhh. Anyways, I just wanted to say to Ro, my girl had a flu shot in Oct 99 and I feel it's made such a difference. By this time of year last year, Olivia had already been hospitalized for 2 pneumonias after a bout with the flu.It seems to have helped Olivia's health a lot.

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Name: HeatherF
Email:flanagan@mail.burgoyne.com
Name:
Date: Sunday, February 13, 2000 at 14:18:43
Comments:

My sister had this problem with her boy at that age, except, he doesn't have Down syndrome!!! She finally duct taped his diaper from front to back where the normal tape goes. It worked!

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Name: Kim (Allison's mom)
Web Site:http://
Date: Sunday, February 13, 2000 at 14:17:23
Comments:

Hi everyone!! I've been gone awhile but it is great to be back here at Unomas. We had Allison's 3rd birthday party yesterday and it was alot of fun. The whole family showed up and we had a great day. She was of course spoiled rotten!

She is doing so well at pre-school it blows me away! The kids there think she is just great, and they don't really know that there is anything different about her. I'm wondering though if it wouldn't be a good learning lesson for all the other kids if the teachers or her Aide gave them a little lesson on Down Syndrome and explain about Allison a bit. I don't want her singled out as "different" but she is who she is and I thought it might be a good idea. Any ideas on that?? Bye for now, KIM

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Name: Mary from U.K
Email:m.tutty@btinternet.com
Web Site:http://www.spencersite.net
Date: Sunday, February 13, 2000 at 13:37:08
Comments:

Hi, Brenda

Thank you for the complement on my flower's. I hope everything is OK with you and your family

Ro

Spencer gets a flu shot every October and he has had a pneumonia shot which lasts a life time.

Since Spencer has been under the care of The Royal Bromton hospital in London, his health has really improved. His sats level is 87% without Oxygen, they dropped at one time to 36%. Spencer's blood chemistry is also improving and at his 6 monthly check up last week the doctors were very pleased with him. His blood count is still high 21.04, but we get this checked every month. When Spencer's blood count goes higher than 22.00. Then he has to go in to hospital for a Venus section.

But we are all happy and looking forward to the summer, We will be taking Spencer to his favourite sea-side resort in April and he is counting the days.

Love to you all,

Mary from U.K

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Name: Brenda
Email:grhouse@cwv
Web Site:http://
Date: Sunday, February 13, 2000 at 12:49:43
Comments:

Afternoon everyone,Hope this finds you all Heathy and Happy.I'm a newbie to this site and am here to stay ,So I hope It doesen't go anywhere either Michelle,I haden't found anything like it before and even with all the tempers flying,I'ts a blessing for me to have this to go to.

Mary Loved the Poem,I visted spencer's site when I first came here and it's great. You must have a greenthumb,I loved all the flowers outside of your home.

Elena hope Tray is still doing well.

Greg keeping Jake and your whole family in our prayers.

Mary hope things turn in the right direction soon for little Aiden,Your all in my mind and praying for you.

Ro wow 80 degree's I'll send you some of this white stuff if you send me some of that warrrrm weather.

Welcome Lynn

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Name: Ro
Email:rrboykin@acadmeicplanet.com
Web Site:http://
Date: Sunday, February 13, 2000 at 11:15:41
Comments:

LUCKY!!!!!!

Spenser tell me how you stayied so healthy this season?:)

Every winter ailment known to man kind has hit our house this year:(

------------It will be 80 degrees here tomorrow------------

Winter is really funny here in TEXAS:)

LOVE RO

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Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://
Date: Sunday, February 13, 2000 at 10:37:27
Comments:

Pajamas on backward..LOL we did EXACTLY that with Stevie-Marie..feet turned around and all...I thought it was original..necessity really is the mother of invention, huh?

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Name: Mary from U.K
Email:m.tutty@btinternet.com
Web Site:http://www.spencersite.net
Date: Sunday, February 13, 2000 at 10:29:18
Comments:

Hi Ro

Thanks for liking the poem and Spencer's web site

I still have a lot writing and work to do on the web site 26 years worth LOL but I hope to finish it soon

Spencer is fine thank you Ro, he managed to survive the winter without a cold or the sniffles

Our weather seem to be getting warmer, the tulips and daffodils are trying to bud

We hope Teddy is keeping fine give him a hug from us here in the U.K

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Name: Ro
Email:rrboykin@acadmeicplanet.com
Web Site:http://
Date: Sunday, February 13, 2000 at 10:12:08
Comments:

OPPS,

I forgot:) I haven't found anything on the removal of "POOP" in the hair:)

I really feel for you, finger painting was always the worst:)

RO

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Name: RO
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Sunday, February 13, 2000 at 10:07:38
Comments:

I'm not sure about this one but I am going to try and post it up.

Potty training?

On yahoo I found a site for potty trainning:) I have no knowledge of it but I ran across it this morning. Here it is if you want to give it a try:) http://clubs.yahoo.com/clubs/helpwithpottytraining

Good luck,Ro

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Sunday, February 13, 2000 at 09:45:24
Comments:

Mary,

That is a great poem:)

How is spenser feeling these days:)

The weather here is fixing to be great.:)(it is rainning cats and dogs here:)

I have visit spenser site several times and would recommend to any new comers:)

Mary tell everyome HI and give out ample hugs:)

Love Ro

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< Name: Lorri Curto
Email:rlcs@pdq.net
Web Site:http://
Date: Sunday, February 13, 2000 at 06:37:32
Comments:

Chris, When I was 17 weeks pregnant I went in for a routine US and it showed nuchal thickening and fluid in the baby's lungs, abdomen and around his heart. I had refused the AFP earlier because I knew that it wouldn't affect my decision to carry to term or not and I didn't want to spend my pregnancy worrying about the results. When the ultrasound showed what it did we had a level 2 ultrasound and then an amniocentesis. The difference between AFP and amnio is that AFP is a screening test and amnio is a diagnostic test. In other words, AFP can tell you "there might be a problem" amnio can tell you "this is what the problem is". Ultrasound can give a lot more information than AFP. After my initial ultrasound I had a level 2 ultrasound the next day where the doctor was able to look with great detail at my baby's heart and diagnose what the heart defect was (an endocardial cushion defect). I found out later that 70% of ultrasounds that show nuchal thickening turn out to be positive for Down Syndrome and when that is combined with endocardial cushion defect the probability goes up to 95%. If I had known those statistics that day I would probably not have had the amniocentesis done but of course hindsight is 20/20. I guess my advise to you if your hesitant about having an amnio is to ask your doctor about a level 2 ultrasound. Get someone to do it who specializes in high risk pregnancy and who does them ALL THE TIME! An ultrasound can be both a screening tool AND a diagnostic tool. Good luck, Your sister in Christ, Lorri

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Name: Lorri Curto
Email:rlcs@pdq.net
Web Site:http://
Date: Sunday, February 13, 2000 at 06:37:31
Comments:

Chris, When I was 17 weeks pregnant I went in for a routine US and it showed nuchal thickening and fluid in the baby's lungs, abdomen and around his heart. I had refused the AFP earlier because I knew that it wouldn't affect my decision to carry to term or not and I didn't want to spend my pregnancy worrying about the results. When the ultrasound showed what it did we had a level 2 ultrasound and then an amniocentesis. The difference between AFP and amnio is that AFP is a screening test and amnio is a diagnostic test. In other words, AFP can tell you "there might be a problem" amnio can tell you "this is what the problem is". Ultrasound can give a lot more information than AFP. After my initial ultrasound I had a level 2 ultrasound the next day where the doctor was able to look with great detail at my baby's heart and diagnose what the heart defect was (an endocardial cushion defect). I found out later that 70% of ultrasounds that show nuchal thickening turn out to be positive for Down Syndrome and when that is combined with endocardial cushion defect the probability goes up to 95%. If I had known those statistics that day I would probably not have had the amniocentesis done but of course hindsight is 20/20. I guess my advise to you if your hesitant about having an amnio is to ask your doctor about a level 2 ultrasound. Get someone to do it who specializes in high risk pregnancy and who does them ALL THE TIME! An ultrasound can be both a screening tool AND a diagnostic t

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Name: Mary from U.K
Email:m.tutty@btinternet.com
Web Site:http://www.spencersite.net
Date: Sunday, February 13, 2000 at 05:18:44
Comments:

I found this poem fitting for ALL of us here on uno mass

Online Friendship...

The true friends who we meet online are a very special kind

They pierce your shields and see within the corners of your mind.

They're always there when you're in need with their power to discern.

They feel your pain.........they offer hope and genuine concern.

We bare our souls, expose our hearts and show our inner fears,

and then before you know it the keyboard's stained with tears.

And if we could see them through that screen then no one could deny

that to be a TRUE online friend they too must surely cry.

~~Author unknown~~

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Name: Beth Ann
Web Site:http://
Date: Saturday, February 12, 2000 at 22:09:56
Comments:

I work with children with special needs At school we have many children who take their cloths off. What we do is very lighly we put masking tape at the wrist and around their bellies so they can not take their clothing off. Alot of our children like to take off their shoes and socks. This can get very cold on their feet so we put masking tape around their socks and they stay on. Try this

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Name: Brennan's mom
Web Site:http://
Date: Saturday, February 12, 2000 at 22:04:30
Comments:

Hi Lauren,

We've had the same problem with clothing removal! At night our daughter kept taking EVERYTHING off and we woke up to some very cold messes. Poop in the hair is no fun either! We decided to put her pjs on backwards....they're the ones with the zipper. At first we had to twist the feet, then I got smart and bought some without feet. It works great! Oh what we'll do....huh? As for daytime, I haven't figured that one out. We are always trying to encourage her to help herself, you know, dress and undress, so it's hard to discourage her, but it is frustrating when the diaper goes off too. Anyone else have any ideas?

Let us know what happens.

Bye for now,

Brennan's mom

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Saturday, February 12, 2000 at 21:58:00
Comments:

Mary DEMAND the aide and just let them tell you no:) When they do go for the juggler:) In our home town the school has already gone around the block with several parents and the school lost.

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Name: Chatroom Problems?
Email:webmaster@unomas21.com
Name:
Date: Saturday, February 12, 2000 at 21:08:43
Comments:

I had another one of those kids making really vulgar comments in the chatroom today. Lately, I've just been looking at the access logs, finding out what host IP they came from and banning people from that IP# from entering the chatroom ever again. So far it has worked well.

Unfortuantely the person calling themselves this foul name, came from a AOL IP. I was wondering if it was going to cause problems for other aol members in that city or area. I guess so. I'll see if I can make the bann more specific to that user so that everyone else can continue to use the chatroom.

If you have had problems getting into the chatroom today, please email me and let me know general (geographic) area you are from. It will help me contact aol and pinpoint the user that was making these offensive comments, and maybe get aol to reprimand them.

I'll try to fix it right now. Please try the chatroom again in about 5 minutes.

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Name: Lauren
Web Site:http://
Date: Saturday, February 12, 2000 at 20:58:10
Comments:

I guess I missed all the problems here this week, but I am still here-though I haven't posted very much.

I have been having a hard time with my son, Danny,who turned 3 in October. For the last week he has been trying to pull off his diaper(even while fully clothed), and has succeeded on several occasions(twice with bm's in it). What a mess!

He may be trying to tell me it's time for potty training, but doesn't seem ready in other ways. I did buy a potty chair, but he has no interest and doesn't seem to have any understanding of its purpose. Anyway, has anyone had this experience and if so do you have any suggestions. It's very frustrating!

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Name: HeatherF
Email:flanagan@mail.burgoyne.com
Name:
Date: Saturday, February 12, 2000 at 20:55:11
Comments:

Hi! Chris (different Chris than posted earlier) and I are still here, DEFINITELY!!!!!! I would be completely lost without UnoMas. I posted this morning, but it got lost. UnoMas was sent to me directly from God, and I know this for a fact. Where would I be without it? I didn't like where I was before, so I know I wouldn't be in a very comfortable place. Thank you so much for all the support we have received in the month that we have been with you!!!:) RO: We are Chris (28), Heather (25), Nicholas (3 1/2 Ds), Matthew (14 months). We wouldn't change Nicholas for ANYTHING. I wish his health would have been such that we didn't have to go through surgery, oxygen, meds, etc., but he is WONDERFUL and we don't know what we would do without him. We had the AFP test, and it came back negative. The ultrasound found a heart defect, so we had an amnioscentesis (sp?) to know for sure that he had Down syndrome, just so we could be prepared and celebrate a baby not a disability when he was born. WE LOVE HIM SO MUCH!!!!!!!!!!!!! Thanks again for being here, we love you all.

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Name: Mary Waid
Email:aenema69@swbell.net
Web Site:http://
Date: Saturday, February 12, 2000 at 20:45:58
Comments:

Michelle,

I think what I'm going to do is asked (demanded if they refuse me) that they provide an aide for Arnold and that he be put in a regular kindergarten classroom. I will be visiting a self contained classroom this Tuesday, but my gut feeling is that I will not agree with them. His principal already told me that she really wish she could get an aide for Arnold but she just can't. I guess we will just have to see.

I will let you know how my visit to the self contain classroom goes. Thanks

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Name: Brennan's mom
Web Site:http://
Date: Saturday, February 12, 2000 at 19:50:56
Comments:

Dearest Loren,

The third paragraph of your post so beautifully articulated my feelings as well. I wish I could write like that! It is so nice to know that others experience feelings like mine. I'm sometimes so ashamed to occasionally be sad or scared that I never tell anyone. I know it's not healthy but of course, I always want to be strong. Thanks for being so honest and letting me know that I'm not alone. Let me emphasize that I love my little peanut sooooooooo much and that I'm glad she's mine...smile.

Bye Bye for now,

Brennan's mom

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Saturday, February 12, 2000 at 18:54:20
Comments:

Hey,

I see some familiar faces:) That is great:)

I also see some *NEW* faces:)

I am sure glad * MICHELLE MC* decided to stay:)

Where would I be right about now if she were to pull the plug?.....looking for the release button on the straight-jacket:)

I would go crazy:)

RO

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Name: Kathy
Email:downtownmom@yahoo.com
Web Site:http://www.geocities.com/downtownmom
Date: Saturday, February 12, 2000 at 18:16:46
Comments:

Hi I just wanted to post again because my URL was lost when my message was reposted. It is www.geocities.com/downtownmom I have not been visiting as often as I used to when this site was just taking off last year, and I am sorry to see all the fighting going on. A similar situation happened to my local support group where I have been a member for over 7 years and the newsletter editor for over 5 years. We have over 100 families as registered members and many of them used to come to the monthly support meetings. But then last year a nasty fight broke out and now we are lucky if 20 people show up to the meetings. I hate to see that happen here and I do hope we can all get along. It is hard when you get a group of women together who have strong, stubborn personalities! I am very laidback and the women in my local support group envy how I can take things as they come without getting hurt. (Believe me, I've heard it all being the newsletter editor for 5 years, the complaints, the back stabbing, the gossip, the rumors, etc.) Now my group wants me to take on an assistant editor (I guess they don't think I can handle the job all by myself anymore) but I won't let that get to me. The president was suprised how well I took the suggestion and told me she was terrified about how I would react. But hey, I don't like to sweat the small stuff and I like to think I can handle critism, so I let it go... Well enough rambling. Visit my homepage and here is my family breakdown: ME (Kathy, age 30) Hubby (PJ, age 30) Ashley, who has DS, age 8 Jamie, Daughter, age 6 Take care and I hope to visit more often! Kathy

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Name: Lynn
Email:JLynnpjones@aol.com
Name:
Date: Saturday, February 12, 2000 at 18:14:00
Comments:

I don't really know how to use message boards. I am a parent of a 9 year old daughter, April, who has Down Syndrome. She is in a regular 2nd grade classroom and only gets pulled out for speech twice a week. She is reading and writing. She has a lot of trouble with math. She is probably reading on the beginning of 1st grade level. She can read books that have a lot of common words. She does spelling every week. I think this helps with her reading. She does 5 words, and usually makes 100, but this is with us working on them every day at home. They give her the test one on one. I thought maybe there might be someone out there who this could be helpful to. Have them wiite me, if so. I love meeting and talking to other parents. I feel like we can all help each other.

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Name: Annie
Web Site:http://
Date: Saturday, February 12, 2000 at 17:38:24
Comments:

Oh, and by the way, I've been gone from Unomas for a while so I don't really know what's been going on here. I do know that this site has been a source of encouragement for me for the past year. Michelle Mc has done a great job and has worked endlessly to restore things when it all went kaput last month. Just remember we are all here for eachother and we all have different things going on in our lives. No one can truly know how much pain or happiness someone else feels. I guess I'm glad I missed whatever was going on here! I've seen it all before though with different names! Just like a family, there always has to be some indifferences and disagreements.

Anyway, just wanted to put in my 2 cents, for whatever it's worth. Let's keep this site together and stick with eachother. Sometimes I feel like it is the only place I can come and talk about how I really feel. You guys have all been through similar feelings and you are always caring and understanding. Let's not lose that.

God Bless you all and your beautiful children and families!

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Name: Annie
Web Site:http://
Date: Saturday, February 12, 2000 at 17:29:18
Comments:

To Chris

It is my understanding that the AFP is not very accurate, but amnio is supposed to be 99.9% accurate. Many people get false positives with AFP. For myself, I was over 35 when I got pregnant with my daughter so my doctor recommended I have the amnio. I did and it showed that she had DS. I was initially shocked and devestated to hear the news, but after the shock wore off I realized there was nothing I could do to change things. I was then able to put my energy into learning all I could about DS. I learned that it really is not as bad as I originally thought. Before my daughter was born I had already contacted my local regional center and found out what was available for us. I was given the diagnosis at 4 months of pregnancy so I had plenty of time to grieve and mourn for tha baby I had expected. I also had time to fall in love with the baby God had given me. For me, to know before the birth was a blessing because I didn't have to go through all those strong emotions at the time of birth when I should be happy.

You and your wife have to do whatever you think is best. Just know that to know ahead of time can give you a sense of empowerment to learn all you can before the baby is born. Like you said you only have 2 choices, to love the baby or to love the baby. Very eloquently put! My beautiful angel is now almost 1 year old! And she has brought more love and joy into our lives then we ever thought possible. I also have 2 older children, 11 year old son and 8 year old daughter, and they totally love their baby sister. Children are such a blessing from God and I love all 3 of mine unconditionally! My prayers are with you and your family as you decide what to do.

Annie

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Name: Mary?Aiden's Gram
Email:sookiebaby@home.com
Web Site:http://
Date: Saturday, February 12, 2000 at 16:44:57
Comments:

Hi everyone. I hope that you and your little ones are in good health, and enjoying every day at its fullest. Just wanted to let you know that Aiden is still in hospital, and that he had his lung biopsy done on Monday. He does not have any lung disease, but his oxygen intake has gone from 1 liter to 2 liters this week. They then told us he had plumary hypertension, then the cardiac specl came and talked to the parents and said that no he dosen't have this either. Now we are back to square 1, and looks like he will be in hospital for awhile yet. As soon as he is taken off oxygen, his stats go down in low 50s in less than a minute. Very scary, just keep us in your prayers, I just cannot imagine life without my beautiful grandson. And just as input on some of the posts I have been reading, I will add this. If Aiden had been born without DS, he would not be the same wonderful little person that he is now, I would not want him any other way, except GOOD HEALTH. I have 7 grandchildren, and they each have a special place in my heart for who they are. Lots of love and good health and happiness to all. Thank you all for your love and concern. This is a wonderful board to come and make your low spirits soar upwards. God Bless you all. Mary

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Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://
Date: Saturday, February 12, 2000 at 16:16:01
Comments:

I am still here too, Ro :-)
Welcome back?? Elena..and prayers for your family.
My Family:
Me (Tina)
better half (Steve)
Alicia (14)
Stephanie (12)
Cricket..oops, Christina (10)
Stevie~Marie (6)w/Ds
Cassie(18 mos.)

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Name: Loren
Email:salori@california.com
Web Site:http://
Date: Saturday, February 12, 2000 at 16:14:38
Comments:

I have been thinking a lot about what has happened at Uno Mas the last several days. What strikes me the most is not how unusual it was, but how common it was. I watched a local agency, full of people who had given me amazing support at times I needed it, self destruct under similiar circumstances. We now have two agencies just a few miles away from each other trying to serve families in a large geographical area. It was extremely sad for us, and the worst was the pressure to choose sides. While this was happening, my son had just been diagnosed with Leukemia and my husband lost his job under very unpleasant circumstances. So I feel for those who come for support during very stressful times encounter fighting. I have heard others that had similar situations happen in their areas. Needless to say, cyberspace is not immune to these problems. On the surface, issues like TNI or inclusion (or a particular book) seem to have precipitated these explosions. However I feel like the intensity of raw emotion that results can't be explained by the relatively inocuous subjects that supposedly ignighted the fires. What is happening? A therapist who has run support groups for parents with new babies with Down syndrome as well as groups for parents with newborns with no disabilites for over 20 years, shared with me this curious observation: When she would ask the parents of newborns without disabilities how things were going, she would be flooded with complaints about sleeping, feeding, crying, minor health problems, marital stress, etc. When she would ask the same questions to the parents who had newborns with Ds, they would answer that everything was fine.

This is my theory, only my personal theory based on what I've seen and my own personal feelings over the last 6 1/2 years. When we find out that our baby has Down syndrome, we are devastated. For me I felt as though my baby had died, the baby I created in my head. I had to (and still do have to) morn the baby I believed I was going to have.

My initial reaction to the baby I was going to have were awful, unsettling feelings, feelings that give me a lot of embarrassment and guilt. This was especially true once I fell in love with my actual baby. How could I feel such awful feelings towards such an innocent, helpless, beautiful baby? This guilt was compounded by some potentially life threatening medical conditions he was born with. As time went on, I put away my guilt and my fears, and enjoyed my increadible little boy. I fell in love with him in the way only a parent can love their child. However, those unsettling feelings of guilt, disappointment, sadness and fear are still there. I have just become better at keeping them in their place as I enjoy watching my son florish. But every once in while, something will happen, someone will say something, a new transition occurs, or some issue comes up and those d*$# feelings come flooding back. As time goes on, I've become more efficient and skillful at handling them, but they are there.

I implore everyone to remember that everyone is dealing with their life and their own circumstances the best they can. Everyone is at their own stages of development. Sometimes it is easy to be upbeat and sometimes it is not. People need to be allowed to feel safe to have both positive and negative feelings. Sharing negative feelings can often be the first step to getting past them. Also, allow those who are celebrating to celebrate. We all have to raise and fight for our children in the midst of misinformation, ignorance, and gut wrenching, soul destroying prejudice. We really need each other.

Take care,

Loren

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Name: Cindy
Email:scottcindy@jps.net
Web Site:http://www.jps.net/scottcindy
Date: Saturday, February 12, 2000 at 15:47:13
Comments:

Elena- so glad you came back and gave us another try. We will keep you and your son in our prayers and please keep us posted. I've done some volunteer work at Ronald McDonald house and know it is a wonderful place to stay during these difficult times. Again, hoping and praying for health and healing for your boy.

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Name: Elena Hines
Email:at Hospital :)
Web Site:http://
Date: Saturday, February 12, 2000 at 15:36:52
Comments:

Well it is ok i prayed last night the person who wrote that little note just be forgiven and not to let any of what i have been through happen to there family for it has been a very very rough time for my family and I losing my son for a few minutes really really made a strong impact on me and i felt so lonely even though my husband was there my little boy was dead and i know he was hanging on with some thread of strenghth left in his little body i cant ever say that i have ever been as scared and as confused as the night my son died in our arms i am so glad and so very very lucky the DR'S brought him back to us his dad and I. I am so happy to say my baby gets to go stay with us at the RMH(Ronald McDonald House) tonight on pass he is off his oxegen has been for 4 days its only been a week today since the 2nd surgery and he is doing great no signs of Blood anywhere that is great news I am sorry for jumping the gun and being very rude in my post i felt i was being attacked for my feelings i appologize for what i said before and will be more passive in things that are said and not take them to heart. Well i better get back to his room before he wakes up and thank you for writting me a note explaing the mix up and i am sorry once again for what i wrote earlier Thanks Again Elena Trey's Mom

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Name: jimmie cricket
Email:warrenken@ftc-i.net
Web Site:http://
Date: Saturday, February 12, 2000 at 15:33:01
Comments:

to greg, i'm so sorry to hear about jake. i'll be praying for him and your family. please keep us posted on how he is doing. marilyn

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Name: Melissa
Email:mjd2@uswest.net
Web Site:http://www.users.uswest.net/~dupontclan
Date: Saturday, February 12, 2000 at 15:30:10
Comments:

Hello everyone. I must say thid place looks better. JC i missed you please email me or post a messge or sign my guest book. i am wonderign how you are doing?? Ro, I am still here for the time being. Melissa : email : mjd2@uswest.net mom to Jason 2 Ds and Aspen 4 jasons b- day is coming up feb 26th, he will be 2 would love to hear fom anyone. we had a scare the other nite. i hate hot dogs... Jason got a piece lodged in his throat. E.M.T's were here to help him becasue i forgot all my cpr stuff. very scarey when they dont breath and try to. ... all is fine our way.

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Name: MichelleMc
Email:michelle@unomas21.com
Web Site:http://www.unomas21.com
Date: Saturday, February 12, 2000 at 15:23:53
Comments:

Hi Ro, I'm still here, of course. I'm glad you are too.

Greg, I'm so sorry about Jake. I will definitely keep him in my prayers

Mary, can you tell me again what you decided about school for Arnold? All the messages are mixed up on the board, out of chronological order and I can't find your post now.

Everyone, thanks for coming back. I think everything has settled down. Please read down a few messages to make sure that you aren't missing replies to your posts. You'd think I'd learn about backing things up, but I rushed right into this file to remove the arguements, and somehow lost it all! I'm trying to piece it back together, but I'm doing a sloppy job.

Elena, I am very very sorry about what happened to you on the message board yesterday. I think someone confused you with another person who had posted a false message about their son having surgery. A few people were onto her and felt used. I suspect that they thought your upset message was from her. I'm sorry you got mixed up in it.

Also to Chris: I didn't have an amnio because I was only 28 when my son was born, 10 years ago. We were completely stunned when they told us our newborn had Down syndrome. I asked the doctor "what about the AFP test? It came back normal!?" He said that AFP tests are very low predictors of Down Syndrome... something like only 5%. He said my AFP came back LOW for whatever they look for regarding Down Syndrome.

I liked what you said about having two choices: to love the baby - or - to love the baby. You are right on. You WILL love that baby, Down Syndrome or not! My son is 10 now, and he is just a nutty little kid, just like my 8 yr old. He plays Nintendo, rides a skateboard, plays with all the kids his age in the neighborhood. Our doorbell never stops ringing, with kids coming to see if Casey can play. Yeah, there are some inconvieniences ... but man I love that kid!

Welcome to all the new parents. I hope you will repost your message, if it was lost today. I think you will find many friendly supportive people here. I'm sorry you happened upon us when things were crazy.

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Name: Dawn
Email:james.bacon@worldnet.att.net
Web Site:http://
Date: Saturday, February 12, 2000 at 14:50:39
Comments:

Hey Ro.............. Branson & me are still here!!!!! :0)

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Name: Brennan's mom
Web Site:http://
Date: Saturday, February 12, 2000 at 14:16:10
Comments:

The message below is to CHRIS. Sorry Greg, you are on my mind because of your son's RSV. I hope he improves daily.

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Saturday, February 12, 2000 at 14:15:49
Comments:

Hey everybody.....

This is RO , as you can tell by the posttop:)

Everything is fine with us in our neck of woods in South Texas.

How about you Judi are you still there?

The weather is Fanstastic:)

Nice and warm and although not sunny, It is great.

H.L.&P. won't like me cause the clothesline is my best friend today:) The dryer is in shock from the well deserved break and the washing machine is lonely cause it is so Quiet.(alright, the kids are making up for the dryer being quiet).

I am interested in who is left here:(

Post up and let us know who is still here.

I am Ro and my family is as follows:

Samantha......26(4 girls)

Christopher...25(1 boy) He hates that name "CALL ME CHRIS"

TEDDY.........16(ds)

Daniel........8

Delano........7

I am glad to be here with all of you and I hope you feel the same.:)

This is RO

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Name: Brennan's mom
Web Site:http://
Date: Saturday, February 12, 2000 at 14:12:58
Comments:

Dear Greg,

I must echo Loren's comments, however our situations were slightly different. My AFP test came back normal but because I was 34 my doctor asked me if I wanted an amnio. I really wanted to but most of my loved ones, with the best of intentions, talked me out of it. Oh, how I wish I had had it done. The shock, sadness, grief and guilt threatened to overwhelm me, and my two older daughters were very confused at all the raw emotions and crying. They both asked why everyone was crying when having a baby was supposed to be a happy event. As for me, the knowledge would never have impacted my decision to have a child...I would have had her no matter what, however like Loren, I need information, imformation, information. My husband and I could have prepared ourselves and had a support group in place BEFORE she was born and we could have rejoiced in her birth rather than grieve. Many of my friends that have children with Down syndrome do not agree with me but that just shows you how different each family is. Do what is best for your family.

As for preparing your son, you know him best. With my older daughters, a very simple explanation with room for lots of questions worked for us. (We told them within a day after their sister was born. They were 5 & 3 at the time...they are now 9 and 7 and our little Brennan is 4!) They still occasionally ask questions but they ALWAYS accept her for who she is, cheer her for her accomplishments and generally treat her like any other kid...she pretty much is! By the way, like any younger sibling she can be "such a pain", according to her big sisters - haha.

Congrats and know that our thoughts are with you.

Bye Bye for now,

Brennan's mom

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Name: Repost
Web Site:http://
Date: Saturday, February 12, 2000 at 13:56:00
Comments:

Name: Lorri Curto Email: URL: Time: Friday, February 11, 2000 at 17:03:50 Comments: I can't get over how many posts make it on here from one day to the next. I came back to find if there'd been any response to my request for info on TNI and have spent at least 45 minutes reading all the posts since yesterday. Someone (I can't remember who) mentioned how much they hate the word retard and so I thought I'd share a talk I had with my two older kids when we found out Paul would have Down Syndrome. I told them that "retard" in music is just a word that means slow down, so whenever they hear the words retard or retarded to just think of it as a reminder to go slower. We've found this to be a useful way to deal with the word and I've even heard them (ages 8 & 10) explaining what retard REALLY means to other kids. Just an idea that I hope someone else can use. Your sister in Christ, Lorri

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Name: repost
Web Site:http://
Date: Saturday, February 12, 2000 at 13:55:09
Comments:

Name: Tina URL: Time: Friday, February 11, 2000 at 17:36:31 Comments: Elena???,
I am sooo sorry that I did not follow up on Oliver. He has been in my prayers and I hope he is doing well, and that you are also. things get so busy here at home, then I finally decide to make time for the computer again, (just in the last couple of days) and it is almost impossible to catch up. I think I will leave the message board alone for a while myself, too much to keep track of, but would love to visit and keep in touch with any and all of you via e-mail etc. At least until I figure out my 'time-thing' the most sincerest of hugs to all...and I REALLY mean that..Tina

Here is my :
e-mail gbtg5@yahoo.com
Icq#:34331038
AOL instant messenger: Murta5
and Yahoo I.D. gbtg5.

I really would love to keep in touch in case you couldn't tell..
Tina

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Name: Repost
Web Site:http://
Date: Saturday, February 12, 2000 at 13:53:57
Comments:

Name: Kathy Email: URL: Time: Saturday, February 12, 2000 at 09:41:12 Comments: To Lori B. I think it is wonderful that you are considering adopting a child with DS. My daughter, Ashley, is almost 9 years old. Visit my website at the URL above to take a look at her. If I had to do it all over again,and if I had a choice to say whether Ashley would be born with Down syndrome or not, I would pick that she would have DS. This might sound cruel or weird to some, but Ashley has DS and it is a part of who she is and I wouldn't want her any other way. It takes a little extra effort in raising her, but it has made me a stronger parent who sees life much differently then I did before I had a child with DS. I've even considered adopting a child with DS also! I wish you luck! Kathy

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Name: Repost
Web Site:http://
Date: Saturday, February 12, 2000 at 13:52:52
Comments:

Name: Angela Email: URL: Time: Saturday, February 12, 2000 at 10:52:28 Comments: Lori B, Hi Lori! I'm Angela, mom to Landon (Ds) and Ashton - 20 month old twins. I would definitely do it again. Raising twins with one having Ds has been an extraordinary experience for me. The only thing I would change is the health problems that Landon was born with. I would wish for no hole in the heart and no intestinal blockage. I go to pieces over surgeries etc so that is the only thing I would change. As for that extra chromosome, it just makes him who he is. ... A truly delightful, precious, adorable and enchanting little boy. I see that you have adopted several chldren who have special needs. I have just started a club/website through Yahoo for parents who have more than on child with special needs or who have twins triplets etc with special needs. There is another mom who joined yesterday who has adopted several children with Special needs too. I think yall would have a lot in common. Please join us at the club. Here is the addy http://clubs.yahoo.com/clubs/multipleswithspecialneeds Please feel free to e-mail me privately too if you like at ahuckabee@yahoo.com Hope to hear from you. Angela

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Name: Repost
Web Site:http://
Date: Saturday, February 12, 2000 at 13:51:54
Comments:

Name: Greg Fillman Email: URL: < http://members.aol.com/gregf24/jake.html> Time: Saturday, February 12, 2000 at 10:57:59 Comments: Hello, Our Son Jake has RSV and has been in the hospital for 7 days now. They had to move Our son to Philadelphia to Childrens Hospital where he remains in criditcal conditon but stable. We have been here for a week and it's been really hard watching him suffer. He is slowly getting better but it will take along time for him to fully recover. I guess what i am asking is for everyone to please say a prayer for him. Let's hope he turns the corner soon. I can't beleive some of the posts i have been reading lately. It's a shame people have to ruin a good thing. Well once again just asking you all to say a prayer for Jake and hope for a speedy recovery. Thanks for your Time: The Fillmans

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Name: Repost
Name:
Date: Saturday, February 12, 2000 at 13:51:02
Comments:

Name: Sherri Email: URL: Time: Saturday, February 12, 2000 at 11:07:47 Comments: Lori B, I am the proud mommy of Jared. He is 30 months old & into everything!!! I would do it again tomorrow. Jared had open heart surgery at 9 months old & we put tubes in his ears last summer. His health overall has been excellent & I know that we have been very lucky for that. I am using "Total Communication" (sign language & verbal)in my household. I would love to hear from you if you have any questions. I wish you & your family all the best!!!

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Name: repost
Web Site:http://
Date: Saturday, February 12, 2000 at 13:50:28
Comments:

Name: Cindy Email: URL: Time: Saturday, February 12, 2000 at 11:08:46 Comments: Greg- Our prayers are with you and Jake. What is the prognosis. I'm sorry but I don't recall what RSV is? You guys hang in there though, and please keep us posted. Hope he gets better real quick..

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Name: Dawn Bacon
Email:james.bacon@worldnet.att.net
Web Site:http://
Date: Saturday, February 12, 2000 at 13:49:55
Comments:

Time: Saturday, February 12, 2000 at 11:09:34 Hi Sherri,

Sorry you caught us at a bad time . This place is usually just great!

Greg,

I am so sorry about Jake's health. He and your family are definitely in our prayers. Please keep us posted as we will be thinking of you.

Dawn & Branson

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Name: Repost
Web Site:http://
Date: Saturday, February 12, 2000 at 13:47:01
Comments:

Name: Mary Waid Email: aenema69@swbell.net

Time: Saturday, February 12, 2000 at 11:13:13 Comments: Hi Greg,

I'm sorry to hear that your son is suffering so much. My heart goes out to you and your family. I don't think there is nothing worst than to have a child for is in pain. MY thoughts and prayers will be with your son and with your family. Please kept us informed on how he is doing.

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Name: Repost
Web Site:http://
Date: Saturday, February 12, 2000 at 13:45:55
Comments:

Name: Mary

Email: FARGODOG@EXCITE.COM

Time: Saturday, February 12, 2000 at 11:54:21

Comments: Greg - My family and I will keep your family and Jake in our prayers. Hang in there and know that everyone is pulling for you!

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Name: Repost
Name:
Date: Saturday, February 12, 2000 at 13:44:53
Comments:

Name: CHRIS

Time: Saturday, February 12, 2000 at 12:11:11

Comments: MY WIFE HAD HER ULTRA SOUND LAST WEEK AND THE PERSON WHO PERFORMED THE PROCEDURE SAID THERE WERE NO SIGNS OF DOWNS SYNDROME. LATER THAT WEEK HER DOCTOR CALLED TO DISCUSS THE RESULTD OF THE AFP TEST. HE SAID THAT THERE IS A CHANCE THAT OUR CHILD WILL HAVE DOWNS SYNDROME. SINCE WE RECEIVED THIS NEWS, MY WIFE HAS BEEN IN SHOCK. I KNOW WE WERE EXPECTING ONE OUTCOME AND NEVER EVEN CONSIDERED ANOTHER, YET NOW THERE IS THE POSSIBILITY OF ANOTHER. HOW ACCURATE IS THE AFP TEST AND WILL THE AMNICENTISIS GIVE A 100% GUARANTEE. THIS IS TO SAY THE LEAST, A LIFE ALTERING POSSIBILITY. I TOLD HER WE HAVE TWO CHOICES, TO LOVE THE BABY OR TO LOVE THE BABY.

ANY WORDS OF ENCOURAGEMENT FROM ANYONE.

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Name: Loren
Email:salori@california.com
Web Site:http://
Date: Saturday, February 12, 2000 at 13:44:44
Comments:

Greg- My son had RSV when he was 17 days only. We were lucky that we caught it early and they were able to slow it down with Riboviron, but he still ended up in the hospital for 10 days and on oxygen for another 2 months. I know it is a very scary virus and I will be thinking of your little boy. Chris- I had a low AFP with my son. I continued with the amnio because I really wanted to know. I had already decided to continue with the pregnancy, but I just had to know; it's my personality; I'm impatient. The AFP is just a screening tool, and the vast majority of babies do not have a any chromosomal abnormalities. However, if the test is positive, it will give you some time to prepare emotionally as well as time to educate yourself. After we found out, my husband and I went to a mommy and me group at a local agency serving families with children with Down syndrome. That was an amazing experience for us. Seeing all those beautiful babies really eased our fears. After we left, my husband said, "If by some slim chance the amnio is wrong and our baby doesn't have Down syndrome, lets adopt one". He said this with tears in his eyes. Another thing: we had made a pact that during this difficult time we would allow each other to say anything, even if it was upsetting or disturbing to the other. We were dealing with such difficult, complex, and sometimes unsettling feelings, that we knew we had to be free to let them out so the wouldn't fester inside. By the time our son was born, we were eager (and somewhat scared) to meet him. He was born with some unexpected medical problems, but because we already know about the Ds we weren't hit with a double whammy like so many other people. Take care, Loren

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Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://www.geocities.com/heartland/grove/6885/Stevie.html
Date: Saturday, February 12, 2000 at 13:42:31
Comments:

Time: Saturday, February 12, 2000 at 12:21:15 Comments: Chris,
First of all, congrats on realizing you TWO choices..and second of all, of those two options I am sure you will make the right decision. :-).
On the amniocentesis (sp), it is my understanding that the test can be 100% accurate in diagnosing whether or not, the baby has Down's. and it is very controversial, When I was carrying Stevie-Marie, the ultra-sound also did not reveal signs of Down syndrome but the AFP gave considerable chances...we chose not to have the amnio done because even though we could have known for sure..we decided we had the same two choices you have, and since there was some risk with the amnio, it was not necessary in our minds. This is a very controversial subject, however and the positive on having amnio done, as it was put to me, was that if you are aware of it, you can plan ahead in case there are the 'common' medical conditions so often associated with Down syndrome. Either way, best of luck to you and your wife. and again, congrats on your positive outlook.

P.S. the link above will take you directly to my page on my daughter with Down syndrome...I love sharing her..and her sisters..she has 4..and hope that doing so is an encouragement.. :) Have a beautiful day!! *hugs* ~Tina

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Name: Tina
Web Site:http://
Date: Saturday, February 12, 2000 at 13:40:56
Comments:

Time: Saturday, February 12, 2000 at 12:37:49

Comments: Chris,
You are very welcome!! I hope it helped.
and, on explaining to your older son...(and this is just my opinion),Stevie-Marie has 3 older sisters and one younger..I attempted to explain to them before she was born, and they did not need my explaniation. It is my opinion that from this experience..so not try too hard to "explain" to him..share pics and information, such as my Stevie-Marie's page..which is why I started the whole web-site in the first place, and I would wait until he has questions..then answer him as honestly and openly as you can. mostly, we look for answers together, and I learn also.. Best of luck. Tina

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Name: Cindy
Email:scottcindy@jps.net
Web Site:http://www.jps.net/scottcindy
Date: Saturday, February 12, 2000 at 13:39:41
Comments:

Time: Saturday, February 12, 2000 at 12:42:31 Chris

My daughter Kaylee is 6 with Ds and she has a younger sister Emma who is almost 4. Since Emma was born after Kaylee, I didn't have to figure out what to tell her. But, nowadays when things don't go quite as quickly for Kaylee (mostly just her speech) I just tell Emma that Kaylee just needs a little extra help. 'Course she's only 4, but that's good enough for her. I don't know what a nine year old would need-but I'm sure you'll get lots of help from other parents here that have older children. God bless your family and tell your wife we are all praying for you guys. Have her visit our family website and see our girls playing at the beach. Hopefully it will be helpful.

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Name: Toni
Email:tmpuck@aol.com
Web Site:http://
Date: Saturday, February 12, 2000 at 13:37:58
Comments:

Comments: Hey Lori.........I am adopting my 9 month old foster son w/ DS.....I'd love to talk w/ you.......Please feel free to Email me......I went through alot of emotions trying to decide......ane I can tell you I KNOW WHAT YOUR GOING THROUGH,,,,,,,,,,,YOur friend in Georgia,,,,Toni

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Name: Kim Funari
Email:Sweetnutn@aol.com
Name:
Date: Saturday, February 12, 2000 at 13:36:29
Comments:

Time: Saturday, February 5, 2000 at 21:48:14

Comments: Hi everyone I am the mother of 2 girls Courtney 12 and Sophia 3. Courtney is the one with Down Syndrome. She was born Jan. 28,1988. She spent the first 3 months of her life in ICU. Then for about the first 2 yrs was in an out of the hospital about evevy few months. She had heart surgery at 18 months was not suppose to make it through but fooled everyone She was doing fantastic, beside the minor problems colds sinuses. then last april 23, she was diagnosed with ovarian cancer. (what a summer) She went through chemo and had blood work done every week and now every 3 months goes through different test. At this point she is doing great. (thank God). She is in the fifth grade. she loves to swim, bowl, play basketball and most of all she loves her music. I am looking forward to meeting alot of people and making new friends :)

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Name: Cindy
Web Site:http://
Date: Saturday, February 12, 2000 at 13:34:47
Comments:

TO JC

You're ALIVE! Have really been missing you and wondering about Vinson. So glad to hear that his neck is fine..what a relief! Geesh, they should have maybe tried it at SEVERAL different angles the first time, huh? Don't they know we have enough things to be worried about??So sorry you had to go through these months of wondering and thinking the worst, but glad for the good news. What's happening with Vinsons school?? I just think of him all the time not having any fun at school and feel so badly-Kaylee doesn't always like everything about school, but she has so many friends and really seems to enjoy most of it (not the writing portion though!!) Hoping Vinson can get a better placement. He's a KID for crying out loud, he's supposed to have Fun! What are these teachers thinking!?!?!? Sorry for going on. Just know that you are missed (where have you been??) and wish we could "chat" sometime! Hugs to Vinson and Cody...Emma turns 4 this month, time is flying by. She still doesn't like pants, only dresses, and if they "sparkle" all the better! Hope everything else at your house is going okay...

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Name: jimmie cricket
Web Site:http://
Date: Saturday, February 12, 2000 at 13:34:10
Comments:

Comments: to cindy, kaylee's mom and becky, sammy's mom. sorry i can't e-mail you so i am answering you here. vinson's neck problem is fine. i call it a miracle the doctors said when they did the first cat-scan they must of had him turned wrong when the pic was taken. i just wish he could have told us that it could of been a mistake when we went the first time. cindy vinson had his t&a out when he was 4 years old. he had no problems, you wouldn't have known he had just been through surgery. give hugs to kaylee and emma and sammy marilyn

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Name: Michelle Mc Again
Web Site:http://
Date: Saturday, February 12, 2000 at 13:31:25
Comments:

Well, dang it, I lost several weeks of messages. I'll see what I can do to repost recent topics.

Sorry for the trouble.

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Name: Michelle Mc
Email:michelle@unomas21.com
Web Site:http://www.unomas21.com
Date: Saturday, February 12, 2000 at 13:29:34
Comments:

As you may have noticed, we've been having some problems on our message board this week. This morning I will be going through and trying to clean it up a little bit, in order to get it back on track.

I apologize, in advance, if some of your comments get deleted in my efforts to give the group a fresh start. There are many new parents asking for comfort and support and I would like them to find it when they come to our site.

I'm very sorry for the recent turmoil. Thanks for your continued participation on Uno Mas.

Sincerely,

Michelle

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Name: Pam Kristals Mom
Email:bcb@yahoo.com
Web Site:http://
Date: Saturday, February 5, 2000 at 12:28:04
Comments:

Hello Everyone Im HOME!!!!!!!!!

I just read the messages on the board and it took me almost 2 hrs to get caught up on the news. I hope that you all are now healthy. Im fine and the computer is fine now.

Michelle I want to thank you for all of your hard work at getting our home back together again. I sure have misses it and my unomas family. You sure do deserve a big hug from us all and a bunch of hugs. Hello to the rest of my family out their, I've missed you all. Were back at last.

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Name: Michelle
Email:jimichelkj@aol.com
Web Site:http://
Date: Saturday, February 5, 2000 at 11:28:46
Comments:

Dear Frances, much as I like ATWT, (or should I say "LIKED"?? my children have taken hold of the remote, and Nickelodeon has taken over!) I think somehow, you gotthe wrong address for your posts. This place, Unomas, is kinda like a soap opera, but in reality its a place for families of kids with down syndrome. Hope you find the correct address soon. go Tom and margo!

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Name: Cindy
Email:scottcindy@jps.net
Web Site:http://www.jps.net/scottcindy
Date: Saturday, February 5, 2000 at 10:47:06
Comments:

TO JC

You're ALIVE! Have really been missing you and wondering about Vinson. So glad to hear that his neck is fine..what a relief! Geesh, they should have maybe tried it at SEVERAL different angles the first time, huh? Don't they know we have enough things to be worried about??So sorry you had to go through these months of wondering and thinking the worst, but glad for the good news. What's happening with Vinsons school?? I just think of him all the time not having any fun at school and feel so badly-Kaylee doesn't always like everything about school, but she has so many friends and really seems to enjoy most of it (not the writing portion though!!) Hoping Vinson can get a better placement. He's a KID for crying out loud, he's supposed to have Fun! What are these teachers thinking!?!?!? Sorry for going on. Just know that you are missed (where have you been??) and wish we could "chat" sometime! Hugs to Vinson and Cody...Emma turns 4 this month, time is flying by. She still doesn't like pants, only dresses, and if they "sparkle" all the better! Hope everything else at your house is going okay...

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Name: Frances Nonenmacher
Email:atwt22
Web Site:http://
Date: Saturday, February 5, 2000 at 09:57:43
Comments:

I would love to see more of Tom and Margo together on As The World Turns.Turns put us fans ,especially me through so much heartache in the last year.Now since they renewed their vows.I want to see them happy again.They are daytime best couple.If any couple in daytime belong together until death do them part and the end of time.It is without any doubt Tom and Margo Hughes.Thank you for this board.Giving us fans to verse our opinion.

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Name: jimmie cricket
Email:warrenken@ftc-i.net
Web Site:http://
Date: Saturday, February 5, 2000 at 09:47:25
Comments:

to cindy, kaylee's mom and becky, sammy's mom. sorry i can't e-mail you so i am answering you here. vinson's neck problem is fine. i call it a miracle the doctors said when they did the first cat-scan they must of had him turned wrong when the pic was taken. i just wish he could have told us that it could of been a mistake when we went the first time. cindy vinson had his t&a out when he was 4 years old. he had no problems, you wouldn't have known he had just been through surgery. give hugs to kaylee and emma and sammy marilyn

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Name: Frances Nonenmacher
Email:atwt22
Web Site:http://
Date: Saturday, February 5, 2000 at 09:45:33
Comments:

Would like As The World Turns to get back on the show Michael Swan. Duncan and Jessica getting back together again. Please consider it Turns.

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Name: Paulette
Web Site:http://
Date: Friday, February 4, 2000 at 21:55:14
Comments:

To Cindy/Annie's mom: My daughter Tiffany (who is now 12) didn't have an aide until she started grade 1. I don't think an aide will interfere with the amount of social time your Annie will get. Tiffany did fine without one but would of probably exceled even more had she had one. She still has her Aides 1 in the morning and 1 in the afternoon. She loves almost all the aides she has had. They are as much her teachers as they are her friends.

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Name: Pam
Email:dwmorrow@stic.net
Web Site:http://
Date: Friday, February 4, 2000 at 14:12:57
Comments:

To Cindy: Regarding aides in the classroom, I can only tell you of our experience. My son is now 10 years old and in the 4th grade. He has been mainstreamed into the public school system since he was 3. He has always had an aide in his class. There was always another child that needed help also in his class so it did not seem as if she was only helping him. The aides do not only help the two children she also helps the teacher with other things in the classroom. If you have a good teacher she will include your child in on a lot of things going on in the classroom and the aide is just there to help when needed. As my son has gotten older he needs more help with his curriculum, as it does get harder for him each year. We have beem very fortunate to always have either a very good aide and when the aide was not that good he had a very good teacher. If you are really concerned, try to spend a few days in the class- room observing what goes on. Believe me I did it many times when I was not sure of the situation. Hope this helps. If you have anymore questions I would be glad to help if I can.

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Name: Pam
Email:dwmorrow@stic.net
Web Site:http://
Date: Friday, February 4, 2000 at 14:11:42
Comments:

To Cindy: Regarding aides in the classroom, I can only tell you of our experience. My son is now 10 years old and in the 4th grade. He has been mainstreamed into the public school system since he was 3. He has always had an aide in his class. There was always another child that needed help also in his class so it did not seem as if she was only helping him. The aides do not only help the two children she also helps the teacher with other things in the classroom. If you have a good teacher she will include your child in on a lot of things going on in the classroom and the aide is just there to help when needed. As my son has gotten older he needs more help with his curriculum, as it does get harder for him each year. We have beem very fortunate to always have either a very good aide and when the aide was not that good he had a very good teacher. If you are really concerned, try to spend a few days in the class- room observing what goes on. Believe me I did it many times when I was not sure of the situation. Hope this helps. If you have anymore questions I would be glad to help if I can.

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Name: HeatherF
Email:flanagan@mail.burgoyne.com
Name:
Date: Friday, February 4, 2000 at 13:45:28
Comments:

Hi everyone! It's my turn to brag about my wonderful Nicholas (3 1/2)! Two things: Yesterday he was playing with his Nana. They saw some pictures of Nana's dog, Lady, who died when Nicholas was 2. Nana was telling Nicholas that Lady was a dog, etc. Nicholas pointed under Nana's desk, where Lady spent most of her time when she was here, and made his sound like "Ya I know, this is where Lady always was!" My mom quickly called me up and let me know about this brilliant child of mine!!!!!!! Also, Chris kissed me goodbye today when Nicholas and i were reading stories. He "told" us to kiss again, so we did and he brought his face right next to ours and wanted to make it a three-some. It was so darling!!! Thanks for letting me share!

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Name: Marie
Web Site:http://
Date: Friday, February 4, 2000 at 13:33:51
Comments:

hiya Ro how are you? havent seen you much lately hope you and your family is doing well. i will give jared that hug and kiss if he lets me get near him haha!!! my baby boy is growing up and deciding all this kissing business isnt to cool unless he initiates it! :):)

by the way jareds b-day is coming up on the 15th this month, since this child is spoiled rotten haha he needs nothing, but we plan on getting him more pj's and another ZOOM tape, which he watches on tv and loves. we told him we will make the sherbert for his b-day that he saw one of the kids make on ZOOM.:) no b-day party this year but he had a huge one last year

have a good weekend ...is there snow out your way??? i dont this foot or so will ever melt away!!!

Tina, saw your post i will email soon!!!! promise....!!!!!

Denise, you are very much welcome. talk to you saturday:)

to everyone else, have a good weekend and Happy Sabbath!!! :)

marie

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Name: steff
Email:jefftixx@aol.com
Web Site:http://
Date: Friday, February 4, 2000 at 13:28:26
Comments:

Hi Cindy< I've heard of people having some creative ways to use their aides. This is the one I thought sounded the best for my daughter.Rather than having her aide following her around 24-7, use the aide as a tool to help the teacher and classroom . Of course there will be times when she needs the aide for herself but I thought it would be a help to the teacher if the aide assisyed them maybe breaking into groups so that the teacher can work with your child just like they work with all the other children. I love the thought of inclusion and would like to make my child stand out as little as possible and with an aide at your side 24-7 I feel that it makes it much less possible to blend inand fell a"part of". Now this would not work for everyone but I liked the idea of everyone working together as a unit.

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Name: Marie
Web Site:http://
Date: Friday, February 4, 2000 at 13:22:48
Comments:

hi marianne!! i have an 8 year old son with DS and we have the book "Be good to Eddie Lee" autographed by the author and its indeed a wonderful book. very artisically detailed and my son likes looking at it. i think the whole story is still to long to hold his attention but someday it will. i recommend it also, thanks for sharing!!:)

marie jareds mommi

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Name: Cindy/Annie's mom
Web Site:http://
Date: Friday, February 4, 2000 at 13:12:27
Comments:

Does anyone have any experience good or bad w/ aides in the classroom? Annie will be 3 1/2 next Sept when she starts a mainstream preschool & it seems the scholls only want an aide as a help to them. We're not sure if it would help her. Because of all her therapies she's great w/ adults. We want her to experience being a kid w/ other kids. Of course if she needs an aide to succeed in academics, I'm all for it, but shouldn't the main focus of preschool be social? She's an only child. Any opions would be welcome. Thanks

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Name: marianne
Email:mvharte@hotmail.com
Web Site:http://
Date: Friday, February 4, 2000 at 12:33:16
Comments:

Hi everyone! I'm a special needs teacher in Boston and have a 2 1/2 son with DS. A fellow teacher loaned me a book called "Be Good to Eddie Lee". It's wonderful. Please read it, it'll make you feel great. Thanks, Marianne

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Name: HeatherF
Email:flanagan@mail.burgoyne.com
Name:
Date: Friday, February 4, 2000 at 10:27:36
Comments:

Catina, What is that book you referred to for telling kids about kids who are "different"? I would LOVE to buy it and share it with Nicholas' cousins. Please let me know, THANK YOU!!!!

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Name: Kim D
Email:mkpsdaly@picc.com.au
Web Site:http://
Date: Friday, February 4, 2000 at 04:03:00
Comments:

Hi all

havent posted in a while thought i would say hi

We are all fine just about melting though it was 44 here today 111.4 i just sat in front of the ac lol

Sheridan is doing fine we are off for sleep studies on the 21st and then it tonsil adenoids and tubes my poor baby , although the ent sat she will sleep a lot better after and have better balance i hope so

Hope everyone is well catch you all soon

Kim down under australia

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Name: Laura Brazelton
Email:brazelto@phonewave.net
Web Site:http://
Date: Thursday, February 3, 2000 at 23:06:37
Comments:

This is for Michelle the webmaster. I uploaded 4 pictures of my kids to the ezpics. So when you get a chance can you help me get them added to introduction of my family. No rush I know you are busy. Just let me know what to do from here. Thanks for all your effort on this wonderful website. Laura

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Thursday, February 3, 2000 at 22:19:35
Comments:

Marie,

Give Jared a hug and kiss.

Ro

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Name: LIZA
Email:LIZA081756@AOL.COM
Web Site:http://
Date: Thursday, February 3, 2000 at 22:13:36
Comments:

HI MY GRANDSON IS DS... HE IS 16 MONTHS OLD.. HE IS SO CUTE AND I LOVE DS KIDS... I AM DEAF... GOD BLESS YOU

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Name: Tina
Web Site:http://
Date: Thursday, February 3, 2000 at 19:05:18
Comments:

Paulette,
That is wonderful for Crystal..like you said before, she is a winner anyway..what a beautiful attitude she must have..you SHOULD be proud. Way to go, girl!!
And on the dental x-rays..that is too funny...the dentist told me today that (after seeing Stevie's discomfort) and that is using the mildest word possible..LOL, he said he would like x-rays but didn't think he needed them that badly yet..I was ok with that as I think taking this slowly with her is the best (and only) way to go..
Tina

Denise,
You have also earned my utmost respect..I don't know how you do it by yourself sometimes..I know that my Steve and his family are God-sends...*hugs* ~Tina

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Name: Dawn
Web Site:http://
Date: Thursday, February 3, 2000 at 18:56:29
Comments:

Paulette,

That is wonderful!!! Tell Crystal "~CONGRATULATIONS~"!!!

Branson And I will be wishing her the best of luck in the next competition!

I know you are so proud :0) Love, Dawn And Branson

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Name: Paulette
Email:schultst@hotmail.com
Web Site:http://
Date: Thursday, February 3, 2000 at 18:34:16
Comments:

Tina, Your talk of dentist reminded me of Tiffanys experience at the dentist. Everytime we go she refuses to get xrays. She doesn't like bitting down on those things they put in your mouth. She will let them count her teeth and clean them. I started going to a new dentist and this one tried as well to get xrays but she still refused. The Dentist still had one the old xray machine in her office so she asked Tiffany if she could take a picture of her teeth with the old machine.(this one takes a picture of the whole face). Well she gave in and let them. It was hillarious when they showed me the xrays. She refused to remove her glasses. Now in her dental records there is a picture of a skeleton head wearing glasses!

Just have to brag about my 10 year old Crystal. Crystal did a speech on DS. It is part of a public speaking competition. There are 4 stages to the competition first she was picked from her class for school competition then she was picked to go to local schools competition and if she is picked from that one she will move on to regionals. I am so proud of her.

Sorry if I wrote such a long message but I just had to tell someone. Bye for now Paulette.

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Name: Denise
Email:DZeke@aol.com
Web Site:http://
Date: Thursday, February 3, 2000 at 17:52:56
Comments:

To Marie, Cindy, Loran and Adrianne thank you so much for your support. I really appreciated it. Thanks again!

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Name: Dawn
Web Site:http://
Date: Thursday, February 3, 2000 at 17:36:56
Comments:

Ai Lay

I just read your e-mail, and I am bawling my eyes out. That is the most powerful message I have ever read relating to Down Syndrome. Do you have the full story on Baby Kayla?? I would love to read it. This is the first I have heard of it. What an intelligent couragous woman, Astra is!

Thank you so much for that story!

You should really post that here at Uno-Mas. I am still crying.

How are your sweet daughters doing?

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Name: Tina
Email:gbtg5@yahoo.com
Web Site:http://
Date: Thursday, February 3, 2000 at 17:29:12
Comments:

Marie,
I am here..sorta..LOL Stevie~Marie had her first dentist/orthodontist appt. today, and all went fairly well until she saw the 'doctor'-gloves..oops..forgot to tell them that.. :) She got a wonderful report though..NO cavities and does not have to go back for 6 months. She has gotten two of her permanent teeth, (bottom front) and only lost one of the baby ones. He assured me that this should be ok though and since her teeth look so good, we could wait a bit, and see if nature doesn't take it's course.

Michelle,
Don't feel bad..you look great ...first thing the dentist asked me was if I was Stevie~Marie's mother or grandmother.. and I thought I cleaned up nice..LOL Not that there is anything wrong with being a grandma..I am just not done with this part yet. hehehe

And on divorce..my oldest daughter is from a previous marriage...her father was insistant on 'finding himself'...it has been about 13 years and I think he is still looking..LOL But, seriously, I do think the most important part with the children, whether they have Down syndrome or not, is to make sure they understand it is not their fault, and always remember, that even (if not especially), these little ones with Down's ..do understand more than most give them credit for.. with your love and support, the child/children will be fine..it is a struggle, but it is well worth it..to make sure they are comfortable with themselves, first and foremost..hope that makes sense..

Well, gotta run..looks like the 'natives' are hungry...and they just ate...yesterday..LOL Have a wonderful evening all...catch you soon...

Denise,
Sorry I haven't answered your e-mail yet...next spare minute I get..I promise..
*hugs* to all...Tina

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Name: Marie
Web Site:http://
Date: Thursday, February 3, 2000 at 15:01:57
Comments:

Tina,oh Tina??? :) just checking in to see how you are...i will do my best to email later ok, hoep to talk to you soon.

marie

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Name: Marie
Web Site:http://www0.delphi.com/dssupport/
Date: Thursday, February 3, 2000 at 15:00:22
Comments:

hi Denise, i know weve talked mnay times about Stevie and his dad, and how similar it is to Jareds story also. you have done a wonderful job dealing with all you have to deal with, in raising Stevie!!! I admire you for that as you know, and the things stevie is doing like being able to write and and his speech and so on are wonderful examples of this and hes not yet 10 years old!!! you are a good mommy, you do the best you can do with Stevie and i wanted to tell you that again. :)

marie

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Name: Marie
Web Site:http://www0.delphi.com/dssupport/
Date: Thursday, February 3, 2000 at 14:54:58
Comments:

Even thought i dont believe people can see down from heaven and talk to people still alive, i believe angels can and it is indeed a miracle that took place for that a little girl, and i firmly believe that prayer makes all the differece. thanks for sharing it:)

marie

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Name: Judi
Web Site:http://
Date: Thursday, February 3, 2000 at 14:12:15
Comments:

Hi, please check out the story at this link. I read it in the newspaper last Sunday and it gave me chills! I can totally relate, w/my boys being born so early, I think half the world was praying for them back in those early days. Never doubt the power of prayer! Hope you like it. http://dallasnews.com/metro/columnists/24150_BLOW30.html

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Name: Judi
Web Site:http://
Date: Thursday, February 3, 2000 at 12:53:57
Comments:

Cindy: The DS medical checklists recommends a TSH and a T4 bloodtest be done annually. TSH stands for Thyriod Stimulating Hormone, and if the numbers go up, it means your thyroid is working hard to produce thyroid hormone. T4 is just another measurement of the hormone. Plus, it's helpful to know the signs and symptoms, (i.e. fatigue, dry skin, constipation, etc.) I know I went thru a stretch where Patrick started taking 4 to 4 1/2 hr naps every day (completely unlike him!) it kind of worried me so I called the Endocrinologist and he wrote me an order to have these tests done (btw, they came back normal, so it was probably just a "growth spurt" thing). The stuff I mentioned in my previous post really applied to babies. Babies bodies and brains go thru tremendous growth during their first year and that is why it is important to catch this early. As we get older, (and in our kids) there may be a gradual "slowing down" of thryoid activity, but over a much longer period of time, therefore, the effects aren't so devestating to the brain as they are in a baby. Hope this answers your question!

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Name: Andre
Web Site:http://
Date: Thursday, February 3, 2000 at 12:45:37
Comments:

Cindy, it is my impression (and I could be wrong) that ordering a regular thyroid test for patients with Down syndrome is one of the more basic things for a doctor to do. Of course, you know the doctor and he/she may be great, but you might be concerned that he/she didn't know that. Are there any other doctors around you that have experience with DS patients? No harm done, of course, the thyroid tested just fine. And, as I said, your docotr may be otherwise great! p.s. I think having a normal result shoud be reassurance enough, but ask if you are worried.

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Name: Dawn
Web Site:http://
Date: Thursday, February 3, 2000 at 12:26:37
Comments:

Hey guy's

Branson gets his thyroid checked at each yearly check-up. It has always been normal, but I am under the impression that he is to have it chcked every year. Hope this helps! :0)

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Name: Adrienne / Russell's mommy
Email:kabvnu@aol.com
Web Site:http://
Date: Thursday, February 3, 2000 at 11:32:40
Comments:

to Denise... My husband's heart broke last night when I read to him your entry on your divorce due to your son w/DS to him. With it taking to people to make a beautiful baby DS or not, it is hard to comprehend not wanting the baby. I can relate to a sense though only because my daughter who is 6 and does not have DS was not wanted by her real father. It was a blessing in disguise because she now has a real dad to call daddy and wouldn't give it up for the world. I hope your son can experience that too and think the others are feeling very selfish when it comes to the love that your son deserves and needs. I have met other people who wonder why I chose to keep my son because they would never had handled it. My midwife said that keeping these kids is rare choice and not many make it. I don't know what I would do without Russell even with all the frustrations he brings me at times. He is a delight to me and I am sure you know that about your son too!!! Again, I am sorry your ex doesn't see that and it is very sad. Give your son a hug for me and my husband!!! Happy Thursday!!!

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Name: Cindy
Email:scottcindy@jps.net
Web Site:http://
Date: Thursday, February 3, 2000 at 11:28:16
Comments:

Judi-just a question for you. (By the way your thyroid information was VERY helpful and very interesting!) I wondered if you know, does the regular thyroid test show accurate enough information or do they need more testing? Kaylee just had her first thyroid test last year (and she's 6) because I didn't realize it was needed, and my doctor didn't tell me. I found out actually through the DS Health website, and told my doctor. Kind of frustrating. However, Kaylee has always done pretty good developmentally (though she does have delay in all area) and her thyroid came back "normal" whatever that means, (i don't know the actual #'s). I just wondered if I needed more extensive testing?

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Name: LeeAnne
Email:lmartinez@sensormatic.com
Web Site:http://
Date: Thursday, February 3, 2000 at 10:48:47
Comments:

LORI - I have the same problem with my daughter. Her pediatrician can always tell what kind of food Jordan has been eating due to the color of her skin. After the doctor mentioned it I started noticing it too. Jordan's doctor said there was nothing to be concerned about. Just try to feed her a variety of colors. LeeAnne

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Name: Judi
Web Site:http://
Date: Thursday, February 3, 2000 at 10:27:54
Comments:

Cindy/Brittney's Mom: My boys (identical twins) just turned 3 in December. When they were born, thyroid testing was a part of their newborn screen. They were diagnosed with "Congenital Hypothyroidism" and have been taking "synthroid" since they were about 3 weeks old, and we see a pediatric endocrinologist regularly. I'm not certain, but I don't think that thyroid as part of the newborn screening is unique only to Texas (where we live). I was told by a doctor that thyroid problems, caught early in children, is one of the most easily preventable forms of mental retardation. I know someone who's baby's test came back "borderline" and her pediatrician was clueless and never followed up with additional testing, so this child went w/o treatment for 6months. When it was finally caught, the Doctor told her that for each month that a baby goes w/o the hormone, it can lose between 5 and 10 IQ points for EACH MONTH IT GOES UNTREATED! Her little boy is 5 now, and is experiencing some developmental delays, and they are really uncertain as to what kind of future he will have. Now, with kids w/DS, the general tendancy is for them to develop it over a period of time, as they get older, probably due to the extra chromosome. In my kid's case, they were extremely premature and the thought is, that they were either born w/o a thyroid, or w/one that does not produce the thyroid hormone, their condition is not specifically DS related. The symptoms you mentioned are all classic for hypothyroidism, along with constipation and feeling "cold" all the time. I was diagnosed w/hypothyroidism a few months after my boys were born. I had thought that I wasn't feeling well was because of all the stress I was under because I had preemies in NICU. Turns out that my thyroid was out of whack and that compounded everything. Once I was on the hormone for a few weeks, I felt much better and was able to "cope" a lot better w/my situation. Sorry if this was kind of long, but I feel very strongly about thyroid testing, given my experiences! Judi

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Thursday, February 3, 2000 at 09:20:59
Comments:

Needing advice?

I'm not sure what info your needing:)

We have two families so to speak:) My husband was married and had 3 children, 1 child who was born with down syndrome(16):) (the breakup took place while he was around 6 but the marriage was going through problems for a while.)(doesn't everyones:)

During our marriage we had 2 boys, ages 7&8 at present.

Life with our families has had and still has it's "ROCKY" moments:)(to say the least).

Our main goal is to make sure "OUR" young man knows that we love him, first and foremost:)

I know my husbands ex-wife has given her all for this young man and she has a very hard life.We work together to give her her free time and breaks(visitations). While he is here she can rest assured that he will be taken care of:). She still worries:) but it's easier to handle.

I'm not sure if you have taken the step(divorce yet)or thinking about it, but with your love and reasssurance; I THINK, it can be done and your child will still feel loved:)

Our young man is very loving and very sure of himself:) Concieted,no never:) (he fancies himself as a real lady's man) We love him dearly and he seems to accept the addition to his family with no problem.

I don't think that divorce is the answer to everything but sometimes there is the need:(

If this course of action is necessary, it can be done with a little damage, Once again this is my veiw but different circumstances get different results.

PLease take any info with a grain of salt(the size of Texas) cause I dont stand in your shoes:)

If you need anything else just ask. I think there are several families here in your shoes as well as single parents who have been in different situations.

Ro

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Name: TammyZ
Web Site:http://
Date: Wednesday, February 2, 2000 at 22:27:16
Comments:

Brenda, no one's mad! We went through this just a little while ago. Your heart was in the right place, and that's all that matters!

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Name: Brenda
Web Site:http://
Date: Wednesday, February 2, 2000 at 21:23:53
Comments:

Sorry about the Hoax message ,I'm new to computers and thought the warning came from a reliable source. Won't happen again, Again sorry.

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Name: Brenda
Web Site:http://
Date: Wednesday, February 2, 2000 at 21:18:58
Comments:

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Name: Denise
Email:DZeke@aol.com
Web Site:http://
Date: Wednesday, February 2, 2000 at 21:04:23
Comments:

To needing advice: Stevie's dad and I got divorced when he was one year old and he is nine now. He couldn't handle the fact that stevie had down syndrome. He remarried and has 2 more children. They live 20 minutes from us. Stevie spent every other weekend with them until he was 5 yrs. old then his step mother decided he was too much work. Now he is lucky if he sees his dad for 3 hours once a month. Stevie doesn't ask for him or seem to miss him unless I mention him so I try not to unless I'm positive he is coming to get him. I hope you have better luck.

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Name: Kari
Web Site:http://
Date: Wednesday, February 2, 2000 at 20:47:50
Comments:

Hi everyone. I have been mising all of you. Where is everyone? I keep trying in the chat room and no one is ever there - it is just filled with names but no one I know and no one is ever really there. Is there a time when people are meeting? I miss talking to all of you.

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Name: needing advice
Web Site:http://
Date: Wednesday, February 2, 2000 at 19:48:13
Comments:

Has anyone here gotten a divorce and if so how has your child with ds handled it?? or any child for that matter??

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Name: Cindy/Brittany's mom
Web Site:http://
Date: Wednesday, February 2, 2000 at 19:39:19
Comments:

First of all I would like to formally introduce my family, sorry for that. I just started yacking. Of course me, I'm 27, my husband Brett 29, our daughter Brittany(DS) who will be 3 on March 20, and last but not least our son Fletcher who will be 1 on the 23rd of this month. To Denise-- I know how you feel. My daughter would eat 24-7 as well and we have to be careful to limit her. It is like when they finally start communicating to you, you really hate to say no for fear they won't ask again. Or at least that is kinda how I felt. I had Brittany lie in my lap to take a nap yesterday and she signed and said pay (play). I saidd no you need to take a nap--again pay--again you need to take a nap--this time bottom lip pucked out and very, very sad and tearful--pay. Needless to say, she got to play a little while longer. You just can't resist. Just remember, in the long run he will appreciate you for it and won't have other medical issues to deal such as obesity, diabetes etc, etc. Hang in there!! :) A few messages ago, someone was asking about dry skin or maybe it was on the Bulletin Board--anyway, Brittany had severely dry skin and doc suggested eucerin cream which helped. We had a ritual after bath before she was completely dry to massage her whole body with it. But when she turned one year old I questioned thyroid testing. Turns out she has hypothyroidism. Endocrinologist says that plays a part in dry skin, hair & nail growth, mental functioning, weight, energy level etc. Has your child been tested?? I read in a medical book that they can be tested at birth. I didn't know that but I think that thyroid testing should be added to newborn tests for children with down's Syndrome. Maybe it is in someplaces. My Brittany was always very fatigued and did good to finish a feeding until she about 6months.

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Name: Cindy/Brittany's mom
Web Site:http://
Date: Wednesday, February 2, 2000 at 19:20:17
Comments:

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Name: Denise
Email:DZeke@aol.com
Web Site:http://
Date: Wednesday, February 2, 2000 at 18:37:01
Comments:

I'm feeling like a really evil rotten mother tonite. I just spent a half hour standing guard in front of my refridgerator so Stevie couldn't get any more snacks out of it. (he would eat constantly if I let him.) He just stood there whining please mom. I'm feeling really guilty cause I'm a single mom and I've had to spend at least part of every week in the hospital due to serious health problems. He gets really sad when I'm gone and I want to make it up to him but I know I can't give in. It's not healthy.

On a positive note, I got a note from his teacher telling me he is a brilliant student, his behavior is great and he is the most capable student she has. Warmed my heart. And he's always going to have the best giggle in the world.

marie, How goes it. Guess what stevie was watching on channel 12 at 5pm? Scary isn't it?

Tammy, I just read Alex's eval. Great job keep up the good work. I loved the picture of alex on the pumkin and the one of him and you dressed in white.

Mary W send me your adress again, the mail is not going through.

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Name: Shirley
Email:Slpanda1@aol.com
Web Site:http://
Date: Wednesday, February 2, 2000 at 18:12:08
Comments:

Happy Wed. everyone. I just wanted to know if there are any other parents who have teenage children with DS. Christoper can go to high school until 21 then he has many options, work part time, there are some classes he can take at our local college or go into a living center and live there and work part time. Having Chris move out is very hard for me but i am looking into some places this year. I hear there is upto a 10 year wait which is fine with me. I want Christopher to have this option but I am in no hurry. He is still so childlike in so many ways. He is a good boy and very helpful to me and my husband. Anyone going through this? LMK

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Name: Adrienne / Russell's mommy
Email:kabvnu@aol.com
Web Site:http://
Date: Wednesday, February 2, 2000 at 18:05:44
Comments:

Well, since Russell has eaten regular foods for some time now and has no problem with ANYTHING we give him I didn't think twice about yesterday food. Boy, let me tell you, his cute little DS body doesn't like kidney beans!!! He has eaten other kinds of legumes so it was kind of shocking this morning to see the blowout he had!! Actually it was kind of funny because it was everywhere. Kidneybeans and corn demolished the bedding and pj's. I had to sacrafice the pj's. I wasn't into trying to make them good again. Russell was so sweet and funny about it. If that happened to me, I would be hysterical but he woke up in "blow out diaper mode" this morning just as happy and smiley as usual. I love him for that!!! Nothing bothers him and it makes our first blowout moment fun and challenging instead of tense!! And I thought reflux was fun!!! LOL!

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Name: TammyZ
Web Site:http://kumite.com/myths/myths/#a2z
Date: Wednesday, February 2, 2000 at 17:39:18
Comments:

This link will take you to a well compiled list of hoaxes, urban legends, and rumors. Good idea for everyone to bookmark it!

Tammy :-)

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Name: TammyZ
Web Site:http://www.symantec.com/avcenter/venc/data/jesus-hoax.html
Date: Wednesday, February 2, 2000 at 17:37:07
Comments:

Please click on the link above, and you will see that the "Guts to say yes to Jesus" email is yet another hoax (as is 99% of the stuff floating around!)

Cheers!

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Name: Brenda
Email:grhouse@cwv.net
Web Site:http://
Date: Wednesday, February 2, 2000 at 16:47:31
Comments:

Hello everyone,Just wanted to let you know if you receive an e-mail titled "It Takes Guts To Say Jesus" Do Not Open It"" It will erase everything on your Hard Drive. AOL states this is a very dangerous Virus, much worse than "Melissa" and that there is No remedy for it at this time. Mary I'm keeping Aiden in my prayers. Dawn also praying for you all too. Also would everyone please pray for my freinds son who underwent heart surgery today. Brenda

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Name: Lori
Email:LGard32@aol.com
Web Site:http://
Date: Wednesday, February 2, 2000 at 14:45:00
Comments:

I just wanted to thank everyone for their quick reply and advice on my son turning into a PUMPKIN! LOL! I am glad that just reducing his orange foods and changing/alternating to green foods will diminish the orange-yellow look. Thanks to all and I would like to add that I have purchased the Beautiful Faces Calendar 2000 from the Band of Angels website posted below and I absolutely love it. Check out their stuff if you get the chance. Lori

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Name: Judi
Web Site:http://
Date: Wednesday, February 2, 2000 at 14:14:19
Comments:

Lori: My kids also turned "yellow-orange" for a while. My boy's cousin (who is 1 day younger than they are, NDA), also went thru this. This was about the time they were eating lots of baby-food. My pediatrician asked me if they liked carrots (their favorite, at the time). He told me it's not uncommon for kids at this age to turn orange/yellow because of all the "carotene". He also told me that a lot of babyfood manufacturers use carrots as a filler in their products because it's cheap and tastes good, so even when you think you're not getting carrots, some of that carotene is still getting in their systems. The color thing went away the more they ate solid table food and not the stuff in the jar.

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Name: WHAT???
Web Site:http://
Date: Wednesday, February 2, 2000 at 13:58:45
Comments:

NO WEDNESDAY UPDATES???

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Name: Mary/Aiden's Granm
Web Site:http://
Date: Wednesday, February 2, 2000 at 13:48:33
Comments:

Hi All. Just wanted to up-date you on Aiden. We were pretty hopeful that he would be coming home today, but the various Medical staff held a meeting this morning. He will have to stay in hospital for awhile longer, as his stats go way down after only a minute without oxygen. They are afraid that he would dislodge the tubing in the night, or if he was not in constant view. This would endanger him to have a heart attach. They have seen a mass in the bottoms of his lungs, and have been unable to determine if it is fluid or enlarged vessels. In order to idenify what his problem is, they have to do a scope probe. This means that he has to be put under, and there are risks to that as well.They are trying to arrange to have this done, but it may take up to 2 weeks to do this. I will be going down early in the morning to stay with him the day, so that mom can go home and get some much needed rest. She has 3 other children at home, a 13yr old boy, and 6yr old twins, boy and girl, who really miss Aiden and there mom and step-dad. Sorry this is so long, but I am all hyped up over this latest development. Lots of love and good health to you all and your families, and thanks so much for all your support.

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Name: Ro
Email:rrboykin@academicplanet.com
Web Site:http://
Date: Wednesday, February 2, 2000 at 13:39:54
Comments:

Marie

,

Marie

,

Marie

<

Help I have something to send to Jared and I can't find your e-mail address:(

Please post it up and this time I will make sure to put it in several locations, (the bathroom mirror, the refrig door, oh and maybe my ADDRESS BOOK:) DUH.

Thanks in advance:) Love Ro

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Name: Cindy/ Annie's mom
Web Site:http://
Date: Wednesday, February 2, 2000 at 12:48:11
Comments:

To Lori, about your son's skin turning yellow: I saw a shoe on E! about the Partridge Family, behind the scenes or something like that, and they said Susan Dey"s skin starting turning yellow/orange because she was living on just carrots, trying to stay super thin. I've heard of it happening to other people too. I think it's part of the human condition, not specifically down syndrome.Although I've heard something about our kids not being able to process vitamin A(which orange & yellow foods are high in).I think that's part of the rationale behind TNI, but I'm no chemist. Hope this eases your fears some.

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Name: Adrienne / Russell's mommy
Email:kabvnu@aol.com
Web Site:http://
Date: Wednesday, February 2, 2000 at 12:01:08
Comments:

Happy Wednesday everyone. I thought I would share this DS web site. You all may already be familiar with it but I enjoy the pictures sooo much, I would hate for someone not to see. I am not promoting the site nor am I encouraging anyone to buy their items (I haven't bought anything myself) but you can look at all the DS childrens pictures. They are wonderful and bring warm fuzzies to my heart when I look at them. here it is www.bandofangels.com xoxoxo

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Name: Julie
Email:jajjames@netscape.net
Web Site:http://
Date: Wednesday, February 2, 2000 at 05:55:06
Comments:

Lori, Thank you for your posting, I have noticed my 15 mos. old girl (DS) has had a yellowish/orange tinge to her bottom of her feet, I have been wondering what was causing it, she loves sweet potatoes and eats a lot of them so that makes sense.

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Name: Brennan's mom
Web Site:http://
Date: Tuesday, February 1, 2000 at 15:19:46
Comments:

Hi Lori,

Just wanted to tell you that I had that experience too, except it was with my two daughters that don't have DS! Also, my friend's daughter, who has DS, had it. I realize this may not be that helpful but I don't recall the doc being real concerned about it. I hope this is your situation as well. Let us know what happens.

Brennan's mom

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Name: Karen
Email:Scutapipig@juno.com
Web Site:http://
Date: Tuesday, February 1, 2000 at 20:34:19
Comments:

Hi Lori!

Your post made me smile! My little guy loved carrots and sweet potatoes when he was on baby food! He also turned "orange/yellow". If I remember right, it took a few weeks of beans, peas, and spinach to get the orange look to diminish, but it did go away! I just reduced his carrot and sweet potato intake to about one jar of each per week and filled the gaps with the green veggies and corn.

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Name: Lori
Email:LGard32@aol.com
Web Site:http://
Date: Tuesday, February 1, 2000 at 20:23:02
Comments:

I was wondering if anyone has experienced their childs skin to be an orange-yellow color? I first noticed this on my son Joshua's bottom of his feet but thought maybe I was imagining it. Then about a month ago, we took Joshua to his pediatric cardiologists appointment and the Doctor asked if he had been eating a lot of carrots. I told her that most of the baby foods he is eating (sweet potatoes, carrots, and the gerber graduate foods---spaghetti, lasagna, ravioli, etc.) all are orange. I asked her how she could tell and she said that his face had an orange tinge to it.She thought that DS children might be lacking an enzyme or something to rid the body of the beta carotein. Now today my mom was washing up the baby and said that the bottoms of his hands and feet looked orange-yellow to her. I am starting to get concerned! If anyone has heard of this I would appreciate your e-mailing or posting to me. Thank You!

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Name: wendy
Web Site:http://
Date: Tuesday, February 1, 2000 at 18:10:15
Comments:

with the hopes of trying to have anouther baby i asked my obgyn aboout the folic acid business and she said that really folic acid is most important in preventing neural(sp) tube defects like spinal bifida not much to do with ds.

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Name: Dawn
Web Site:http://
Date: Tuesday, February 1, 2000 at 16:13:36
Comments:

Adrienne,Russell's Mommy

That is to cute! I love it when Branson does his little "dances" LOL I bet he is adorable!

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Name: Marie
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:43:19
Comments:

hi tina i am here many many times hehehe wonder why the submit button does that??? how are you. its nice talking with you:) marie

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Name: tIna
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:24:43
Comments:

well, now I have gone and done it...on my last post I actually lost the "I" in me..Was that a "Freudian" slip 'er what...LOL

Ro, I am glad to see you posting again...had missed reading ya.. :)

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Name: Tna
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:21:39
Comments:

Has anyone heard from Marie???

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Name: Tina
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:20:53
Comments:

Marie, Marie, Marie.... LOL

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Name: Marie
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:13:50
Comments:

hehe this is to funny!!! sorry again...heheh

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Name: Marie
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:10:41
Comments:

sorry its on here 3 times haha!

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Name: Marie
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:08:22
Comments:

sorry its on here 3 times haha!

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Name: Marie
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:00:46
Comments:

I just wanted to mention that Dawn had not made any comment about changing her child, she was just responding to article.

i Marie did not say that taking vitamins during preganacy would definitely prevent DS. I said that i had read things concerning vitamin defeciency's in moms whose have DS but perhaps not all

it might be a good idea before repsonding to a post that we read it carefully so no one feels like they werent heard.

again just my opinion

marie

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Name: Marie
Web Site:http://
Date: Tuesday, February 1, 2000 at 14:00:06
Comments:

I just wanted to mention that Dawn had not made any comment about changing her child, she was just responding to article.

i Marie did not say that taking vitamins during preganacy would definitely prevent DS. I said that i had read things concerning vitamin defeciency's in moms whose have DS but perhaps not all

it might be a good idea before repsonding to a post that we read it carefully so no one feels like they werent heard.

again just my opinion

marie

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Name: Marie
Web Site:http://
Date: Tuesday, February 1, 2000 at 13:59:43
Comments:

I just wanted to mention that Dawn had not made any comment about changing her child, she was just responding to article.

i Marie did not say that taking vitamins during preganacy would definitely prevent DS. I said that i had read things concerning vitamin defeciency's in moms whose have DS but perhaps not all

it might be a good idea before repsonding to a post that we read it carefully so no one feels like they werent heard.

again just my opinion

marie

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Name: Judi
Web Site:http://
Date: Tuesday, February 1, 2000 at 13:35:26
Comments:

Tonya/Dawn: Regarding your comments about "gene therapy" and changing your child, please check out this article that was written by the Pres. of our Local Support Group: http://www.downscity.com/dsgdallas/genether.htm Pretty thought provoking. If you could give your child a "pill" that would wash away that extra chromosome, would that mean you'd wash away that personality also? A pretty controversial subject, yet like she states in the article, advances are made all the time and some of us may have to make these tough decisions. I'm not not making a judgement one way or the other, just passing on some more info to add to the thought process! As for the folic acid thing, I'm still searching for the link I used to have about a recently published article about this. There was a study done by a Dr. Jill James w/FDA. Her study shows that us Mom's w/Kids w/DS process folic acid differently than non-ds Moms. That's my non-technical interpretation of her findings. Her study is now going forward in testing children to see if they process vitamins & minerals differently because of the extra chromosome. She was looking for children who were not on TNI and also who had a non-ds sibling as a control. If anyone is interested in more info about her study, let me know and I'll see what I can come up with. I do agree that the article that you all read was grossly misleading. Taking Folic Acid won't prevent DS like it can prevent spina bifida or neural tube defects, but there is some link between the Mom's and chilren w/DS. Hope this helps. Judi btw: I saw a snippet of Leeza yesterday and that woman who thinks her 5 year old is going to be "cured" soon is quite delusional, IMHO.

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Name: Michelle
Email:jimichelkj@aol.com
Web Site:http://
Date: Tuesday, February 1, 2000 at 13:17:52
Comments:

Hi. just wanted to update anyone interested in the first ever get-together for Unomas families. The date is firm now, Jun 2-4 this summer in Winthrop, Maine. The first of June is also available, but there's not much scheduled prior to Friday. We are still working on group discounts for airfare. The cost of camp itself, including cabin, meals, childcare, beepers, seminars, snacks, entertainment...etc., is $ 26 per person per day. (I am working on an infant/toddler rate.) We have several guest speakers arranged, including a geneticist, and a speech/language pathologist team. They will be available for questions after each seminar. We will learn some of the newest ways of teaching speech and reading to children with DS, including the P.E.C.S. program. The geneticist will give us some better insights into DS and things we should pay attention to. We are currently trying to raise enough money to bring Karen Gaffney, an incredible young lady with DS, to Maine, to speak also. She is amazing. You can check her out at www.karengaffneyfoundation.com . I am really hoping she can come. The camp will be held at my old summer camp, mechuwana, about one hour from Portland International Jetport. Transportation will be provided to anyone who needs it. Cabins sleep 10 people, some will be for small groups, but there may be a few intended for several smaller 2-3 person groups, so we can arrange for people who would like to bunk together to do so if we know soon enough. There will be plenty of free time, and lots of fun activities for adults and kids. We plan on alot of sharing, laughing, and friendship. There aren't a huge amount of cabin spaces available, so let me know soon if you are interested. The camp is called "Always Room for Unomas, Family Support weekend 2000." Please contact me at the above email if you are interested.

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Name: Lisa
Web Site:http://
Date: Tuesday, February 1, 2000 at 12:34:06
Comments:

Tonya & Marie, I would agree with Tonya that this article must be inaccurate in stating that taking Folic acid during pregnancy could prevent Down syndrome. I think they should have said before pregnancy, because I have heard of INITIAL studies that say it MAY be linked. However, the idea of "ending" Down syndrome through this method doesn´t sound realistic to me. I took pre-natal vitamins religiously prior to conceiving my son (not to mention that I drink about a quart of orange juice a day), and he has Down syndrome. As a note, I adore my 6 month old son, he is 100% free of health problems (thank God), and doing really well. However, if I knew there was something I could do to prevent a future child from having Down syndrome (like taking a supplement), I would certainly do it.

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Name: Dawn
Email:james.bacon@worldnet.att.net
Web Site:http://
Date: Tuesday, February 1, 2000 at 09:44:24
Comments:

Branson went today for his post-op, the Dr. said everything looks great! :0) He is also feeling much better. In fact he is doing his favorite thing to do which is watch ELMO! He is an elmo fanatic, I kid u not! *LOL*

Ro, thanks for the sweet email! And ya know, I get what you were saying in your previous post! :0)

Thanks to all that have been thinking and asking about Branson, it means the world to me!

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Name: Brennan's mom
Web Site:http://
Date: Tuesday, February 1, 2000 at 09:21:39
Comments:

Good morning one and all!

Cindy/Brittany's mom,

You did not sound negative at all....just honest. Who among us has not experienced that?

Dear Ro,

I'm pondering right along with ya...smile.

Cindy,

Thanks for making us aware of Laura's story. Once again, I'm humbled by how caring this place is.

Bill,

Thanks for helping us to remember to never stop fighting for our kids. You set a wonderful example for all of us.

Shirley,

Thanks for your encouragement. There are some days when I know I need to hear it.

Dearest Laura,

My heart aches for you and yours. Grieve however you need to. Please let us know how you are doing.

Brennan's mom

P.S. I just love that little chili pepper! What a great logo!

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Name: Brennan's mom
Web Site:http://
Date: Tuesday, February 1, 2000 at 09:05:35
Comments:

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Name: Bill
Email:bill.tutty@btinternet.com
Web Site:http://www.spencersite.net/
Date: Tuesday, February 1, 2000 at 08:44:08
Comments:

I have posted in the bulletin board a comment in reply to Laura's story and Cindy and to what the future holds for DS people. I would like you all to read it as it contains examples of the treatment of older DS people.

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