HI EVERYONE !!!! I AM BACK !!!!!!!Thank goodness for Mom's that know computers !!! My Mom fixed my problem on my pc.I hope that everyone had a great weekend. We had a busy one ( what else is new ???)
Clark really was walking today..and he actually acted like he wanted to. He was walking with one hand support with my husband and was very proud of himself.One of these days when I least expect it he is going to take off. My shoulder, arm and back can't wait !!!( Clark is about 34 lbs and is almost three for those of you that don't know me)
Alice, It sounds like you are doing a great job !!! What is wrong with those people in your state ?!!! Clark has been doing therapies since he was a month old. I feel that it is your right to recieve the services that the state is supposed to offer. I thought that all states had to provide you with those services. Heck, I an constantly on them to add more services for Clark. They wanted to cut down on his speech therapy and I said NO. They didn't argue with me ( which was nice for a change) Reguardless you sound like you are doing a terrific job !!!
WEll it is nice to be back....I have lots to catch up on.
How are you Ro ?? I read about your Easter...what an adventure you must have had !!!
Hope everyone has a great day Monday!
Hugs to all,
Lorena
HI EVERYONE !!!! I AM BACK !!!!!!!Thank goodness for Mom's that know computers !!! My Mom fixed my problem on my pc.I hope that everyone had a great weekend. We had a busy one ( what else is new ???)
Clark really was walking today..and he actually acted like he wanted to. He was walking with one hand support with my husband and was very proud of himself.One of these days when I least expect it he is going to take off. My shoulder, arm and back can't wait !!!( Clark is about 34 lbs and is almost three for those of you that don't know me)
Alice, It sounds like you are doing a great job !!! What is wrong with those people in your state ?!!! Clark has been doing therapies since he was a month old. I feel that it is your right to recieve the services that the state is supposed to offer. I thought that all states had to provide you with those services. Heck, I an constantly on them to add more services for Clark. They wanted to cut down on his speech therapy and I said NO. They didn't argue with me ( which was nice for a change) Reguardless you sound like you are doing a terrific job !!!
WEll it is nice to be back....I have lots to catch up on.
How are you Ro ?? I read about your Easter...what an adventure you must have had !!!
Hope everyone has a great day Monday!
Hugs to all,
Lorena
HI EVERYONE !!!! I AM BACK !!!!!!!Thank goodness for Mom's that know computers !!! My Mom fixed my problem on my pc.I hope that everyone had a great weekend. We had a busy one ( what else is new ???)
Clark really was walking today..and he actually acted like he wanted to. He was walking with one hand support with my husband and was very proud of himself.One of these days when I least expect it he is going to take off. My shoulder, arm and back can't wait !!!( Clark is about 34 lbs and is almost three for those of you that don't know me)
Alice, It sounds like you are doing a great job !!! What is wrong with those people in your state ?!!! Clark has been doing therapies since he was a month old. I feel that it is your right to recieve the services that the state is supposed to offer. I thought that all states had to provide you with those services. Heck, I an constantly on them to add more services for Clark. They wanted to cut down on his speech therapy and I said NO. They didn't argue with me ( which was nice for a change) Reguardless you sound like you are doing a terrific job !!!
WEll it is nice to be back....I have lots to catch up on.
How are you Ro ?? I read about your Easter...what an adventure you must have had !!!
Hope everyone has a great day Monday!
Hugs to all,
Lorena
Alice,,I read your last post on EI not assisting you..........sounds like you are doing a great job w/ your little one......but why do you not qualify for EI,,,,did they give you a reason.....or did I miss out on something.......Did your MD provide you w/ an order????? What state are you In?????
Chatters special
6:00 P.S.T. Tonight
Hi All, Hope your all having a good weekend. The weather has finally picked up here today......we've finally seen the sun and it looks and feels good. Mono, congratulations on your baby Sean. Just wanted to sympathise with you on the feeding. Feeding has been the toughest test we had with Ethan (20 mos with DS). He too had a cardiac condition (AVSD) and we went through a lot feeding him. To this day I'm convinced that the medication made a bad problem worse, with Dijoxin (spelling??) being the worst culprit. Unfortunatley they're an necessary evil. Ethans paediatric consultant agreed with me (the only one though) that the dijoxin makes them feel sick so as a result they're not hungary. Also the fast rate at which they're little hearts beat also tires them out and drinking a bottle is like running a marathon for them, so I suppose they wouldn't be too keen on doing that too many times a day!! Hopefully, this is just a little hiccup for you and he'll get over it quickly and start taking his bottle again soon but if it goes on much longer get some help from his cardiac team as I know only too well how stressful it can be trying to feed a baby that wont be fed. If I can help in any way feel free to e-mail about anything as believe me when it comes to feeding we've been there done that. Anyway, enjoy him as much as you can as like all babies they grow toooo fast.Well enjoy the rest of the weekend everybody, will post again soon.
Paula
One more thing, I only put the powder vitamin C in one of her bottles per day, you might have to play around with the dose, pleas look into this before you try! Like I said it was the only thing that worked for us!! You may have to have powder vitamin C ordered, it has a short shelf life, so it isn't usually carried, health food stores also usually carry it.
Hi everyone,
I have a comment on constipation. When Brooke was about ten months, she has a bad time with it. I took her to the chiropractor because nothing else worked. He told me to put her on powder vitamin C. He told us to put 1/4 tsp in he juice and continue adding aa additional 1/4 tsp to each consecutive bottle untill she went, then to leave it at that level. I was told our bodies easily get ride of excess vitamin C so the chance of overdosing is low, please look into this I am not a doctor. Anyway I put 1/2 tsp in her juice bottle the first time, in two hours vitamin C did what two weeks of other doctor recommended drugs did not. The only thing is our pediatricion didn't like this, he said it was just agitating her intestines, Brooke was on the vit. C for about a year, then I quite using it. It worked great for us, might be something to look into for your little ones.
Hi all!I do not why, but we do not have any help from EIP - early intervention program(they promise and promise....) Our son is 5 month old. Until we are waiting for them(EIP), we work with our sun, Luck, by ourselves. As I wrote before we do lots of activities: work outs, swimming(at our bathtab), massage, reading, talking, and so on..
We even inroll him in swimming class(bable baby). Our Luck is youngest(group form 6 mo till 3 years), and it is so funny that at our fist lesson he was one who did swimm and did not cry. And I forgot to tell he is only child with DS in this group. We are so proud of him.
Yes, you are rigth who says that our kids are gifts! And yes if we want them not to be late, we have to work very hard and love them.
Thanks to everyone who answeared my questions.
Dear Mono, congratulation on the birth of your baby!About poor feeding. I would contact the doctor right away. Our baby did not want to eat because he was to vick of jundis(wrong speling - sorry). We make turns with my husband to feed him every 2 hours during the day and every 3 - the night. We used my breast milk.
You have to call doctor and find a real couse of your baby poor feeding. It is very improtant for them(babies) to eat at their fist month, so please contact your doctor.
Good luck!
Hi: ANDREA: I also work full-time. In fact I work all three shifts in a 2 wk period. Part of being the poor middle class. We wouldn't qualify for any aid if I quit. My kids love being at daycare though. It is a small private one and the girls all love Lia(16 months) to death. Joyce: My daughter was almost 13 months when she started getting teeth. Then she got 4 right away. Now she hasn't gotten any more since. Alice: My daughter went to daycare at 3 months. It is a small private day care with all different ages. There is another girl Lia's age and the rest are older than her. They love Lia and she them. We are in a fairly small town and this is good for everyone. All the kids know Lia has ds but they really don't understand it of course. When she is in school she will be mainstreamed partially and I think The kids from daycare will be great for her there. To anyone: Please help me on the constipation. WE have tried malt-suppex, peri-colace, udos oil and apricot nectar (prune juice first of course) to no avail. She still struggles and cries and splits and bleeds. It makes me ill. Let me know of anything else. Nancy
*****HELP***** Vicki needs help did ya'll see her post?
Her little girl doesn't like the brush:(
Could it be......Tactile defense?????????
I think that is the right word.
Mono,
***CONGRATULATIONS*** On the new baby:)
Been here done this and still find little time so I will return to annoy ya:)LOL
Ro
My son Sean was born 4/10/00. He has Ds. We knew this swveral months ago, along with the knowlwdge of the cushion heart defect. He's doing well so far, but he's not eating too well the last day or two , since he was started on 2 medications for his heart. Any ideas/thoughts from some of you who have been here before?
hi
Hi everybody-had another bad week and just got out of the hospital yesterday. My surgery is on wednesday so I'm asking everybody to keep me in their prayers until then. This is my last chance to get rid of the headaches so I'm a little nervous this time around. They are going to let Stevie spend the week at school so I don't have to worry about him at least. (He goes to a residential school where he is a day student.)Now I know most of you have younger kids but I need a creative answer to a problem I am having with Stevie. He goes through these bouts of swearing every couple of months. I used to send him to his room for a time out but that didn't seem to be working. So yesterday he looks at me and says "S**T, oooh bad words, back to my room" well I tried a different tactic and smiled at him and said "Oh stevie what a creative use of your words." Well that was not the response he wanted, it through him for a loop and he stopped. He tried it again today, I repeated the same thing but this time he hauled off and hit me with his plastic stick. He has never done this before. I of course got mad and ended up dragging him back to his room for a time out. (He made himself limp and wouldn't walk.) So he's back there sobbing and I'm feeling like the worse mother in the world. Any ideas would be greatly appreciated.
Hi everyone.Jackie, Emily's graduation pic is beautiful.What a pretty girl.By the way occasionally I'll let Olivia who's 2 and a half pick out her clothes.Well she always goes for the ratty happy face hippy looking t-shirt.It's cute but trashed.And also for the levi's with big holes in the knees.She likes to stick her hand in the holes and yell,KNEE.Which brings up something funny.The first time she got a real knee scrape it was on her knee she sat on the ground on the Venice boardwalk and yelled OW KNEE.Well she got a lot of laughs cause she's sooo dramatic.Now no matter where she hurts herself she yells OW KNEE.I've noticed with her that when I teach her something she tends to generalize.For example every chair she calls a highchair.Ya know what I mean?I've just been teaching her words that she gets nicely but I'm finding that when I try to show her elbow hurts not her knee that she has a hard time thinking the first word I taught her is written in stone.Anyways if anyone has any idea what I have just written and has any ideas let me know. Thanks.
Olivia is feeling much better today just a light fever and no raccoon eyes so I think it may just be the 2 teeth coming in.She got her teeth at 11 months. It seemed as if the teeth took a long time to pop through. Now she's going on tooth 15 and 16.So I'm hoping that's all that's wrong with her.Do your kids get raccoon eyes(real dark circles) when they're ill.That's when I seem to know that Olivia is really sick.Hope all is weell with you and yours. Steff
Hi everyone, Last week I told you Jarrett (20 months) started standing up in his crib.....well this week he got out of his crib, we went to check on him after putting him to bed and there he was crawling around his room. We have lowered his mattress so there is no way he can get out now.I went to the photo album to peek at the pictures and my mouth dropped...I seen the picture of Emily....she is so beautiful!!! I also seen alot of new pictures of the little ones....cute,cute, cute everyone one of them.
Andrea...I work also, (50) hours a week and by time my day off gets here I am pooped, my mom watches Jarrett and takes him to pt and has a developmental therapist come to her home,on Thursdays I take him to water theraphy after work...he's a busy little guy and I am so thankful I have my parents to help out. My mom thinks he keeps her young. LOL She also watches Jarrett's 4 yr old cousin and he is a big help to her, he keeps Jarrett entertained and it is so cute because Jacob knows we are teaching Jarrett sign language so he is always signing to him.(Jacob has learned many signs by going to theraphy with Jarrett) Next year Jarrett will be going to pre-school and its kinda sad to think he wont be with grandma all day, they have such a close bond.
Sorry I cant remember who was asking about teeth...Jarrett got his first tooth at 19 months he is 20 months now and has 8...I swear they are popping up like popcorn!! Have a great weekend everyone.(((hugs))) Diana
Mornin'Glad you liked Em's grad pic. She liked it so well we had it put on those little name cards that go in the graduation announcemnts last year. Speaking of graduation, do any of you have any good ideas for guys? Most of Emily's friends that are graduating this year are guys and they are between 19 and 22. Most don't drive so keychains might not be best idea. I'm tired of gift certificates, too.
About hair.........We were always lucky with Emily. She has always had a lot of thick shiny hair that grows very quickly. We have usually kept it at least chin length because it looks best on her.....but long hair can really be a pain! She started washing it herself when she was about 9. Of course, every few months when we would get a cut I would have them use a special shampoo to get all the left in shampoo residue out! She has always used the blow dryer and in middle school started using the curling iron. I don't know why I taught her all this because now away from home she only washes and dries her hair. Never curls it. I imagine she only washes it once a week or when we're coming.....sort of like changing her sheets!
It's funny, I had forgotten until I found UnoMas how important Emily's appearance was to me when she was younger. I spent a fortune on cute clothes and trendy things. It did make me feel more a part of everything....notice I said ME.
Through the years that's all pretty much taken a back seat to our struggles with inclusion, IEP's, and puberty and hormones. I still want Emily to look nice in public like you would hope all your kids would, but now I try to defer to her wishes and idea of style. I will say at home a shrunken up wrinkled Backstreet Boy tee on a too heavy bod does not leave the house!!!!! (it's probably her "uniform" at college).
Thanks for all your good wishes for my sister. She's recovering nicely and I think I'll go with Ed when he makes rounds and see her. She still is on oxygen and wants someone to take her outside to smoke! I thought this "brush" would change all that. I've never smoked so can only imagine how hard it must be to quit.
We have tickets to see travelling production of Stomp tonite. I love it on TV in 10 minute increments but am not sure these two middle-agers can tolerate two hours of all that noise!
Oh yes, no longer worry about Em shaving HER head. She said Mystery just did it for attention. Last semester apparently Mystery had every one gather periodically in her room to view the results of her pregnancy tests. (interesting......because Mystery doesn't have a boyfriend!)
Jackie
Good morning, everyone!Just a quick update. My hubby is leaving in a few days, so we are BUSY. Today, took 2 oldest kids to Rimbeyat 7:00 am., so they could go gliding with the Air Cadets. Law. left at 9:00am with two youngest to get some parts for the truck. Returning at 9:30 to give me a ride to work, so he can have van. Then they are going to do some work on our big truck. Then on to Lacombe (1 hr. away) to arrange financing so he can go to work. Be back by 2:00 to pick me up, then to Ponoka at 3:00 (1 hr away) to pick kids up from Air Cadets. Then, supper prep (leftovers) I also just put a load of alaundry in (waiting for Unomas to boot up), and more to do after work. My carpets are in need of vacuuming, and windows are filthy. This evening, we need to get the motorhome ready, as Lawrence is taking that tomorrow morning down to where they'll be working. Monday, get new tires on the big truck, and a hitch put on it, also need to haul gravel for a customer before going down south. As well, need to get the groceries for Lawrence while he's away, or at least for the first month. Tuesday, get new door signs on the big truck, and travel down south. What is happening is that my husband starts work next week hauling ashphalt for a paving crew down in southern Alberta, and will potentially be gone until October. He's never done this before, so we have no idea how much time off he'll get.
Sorry I didn't answer any of your posts, I will try when I have some spare time,which will be in about five days!! I'm praying for you, and wishing I had time to read your posts and answer.
I do have time for a joke (if I have one in my files, that is....LOL
A lady about seven months pregnant got on a bus. She noticed the man opposite her was smiling at her. She immediately moved to another seat. This time the smile turned into a grin, so she moved again. The man seemed more amused. When on the fourth move the man burst out laughing, she complained to the driver and had the man arrested.
The case came up in court. The judge asked the man what he had to say for himself. The man replied, "Well your honor, it was like this. When the lady got on the bus, I couldn't help noticing her condition. She sat under a sign That said, "The Gold Dust Twins are coming." and I had to smile. Then she moved and sat under a sign that said, "Sloan’s Liniment will reduce the swelling", and I had to grin. Then she placed herself under a sign that said, "Williams’ Big Stick Did The Trick", and I could hardly control myself. But---when she moved the fourth time and sat under a sign that said "Goodyear Rubber could have prevented this accident", I laughed out loud.."
This is a real story from a courtroom transcript.
Hope you liked it.
Denise and Brenda, I hope that you are both feeling better soon, Ro, that goes for you too!
Ciao for now.
Shawna
OOPS!! I wasn't quite finished with that novel, but accidentally sent it anyway. Several years ago, our ST told me that she had read somewhere that babies who spend a lot of time crawling before they take off and walk will become good readers. I have absolutely idea why this would be true and I laughed at her when she told me this.....but, one of Emily's strengths now is her ability to read. Coincidence? Probably so. I can remember being a bit worried as she approached 3 years and still wasn't walking steadily. She had some tactile defensiveness in her toes which made her not want them to touch the ground. She tried to walk only on her heels! Pretty funny to watch! We did some interesting things in our attempt to help her: Her PT recommended that we buy a trash can that was about as tall as Emily's chest...then we stood her inside the trash can in front of a Barney movie for 20-30 minutes. Really! It gave her a little support and she was able to stand without help for longer and longer periods of time. It's pretty funny now that I remember it!Andrea, I also work full-time. Over the years, my work schedule has changed so much. When Em was a baby, I worked 1 night shift a week. Later, it increased to 2 nights a week. For the past 3 yrs, I've had a full time day job but it has been really flexible so I am able to take the kids to appointments, go on school trips, etc. It does keep me busy!
Ok, I'm off to change the sheets (I'd love to have a clothesline!!), dust and then have fun!! Tomorrow afternoon is Emily's first tball practice. We have film in the camera so be prepared for pics.
Have a great weekend!! Susan
Good morning!!!Just time for a quick note about breastfeeding. I breastfed all of our children. Before Emily was born, I just assumed that she would be breastfed too. But somehow during the 3 weeks that we were preparing for her birth and reading lots about Down syndrome, I got the impression that she would have a harder time learning how to nurse than other babies. The only reason I think she was a bit slow to start is that she had surgery at 1 day old and had to wait 6 days before she could be fed. Then she was only allowed 1/2 an ounce of breastmilk in a little bottle every 4 hours! She became so used to the premie nipple during that week that it was a little difficult to get her to switch to the breast. But within a few days she was a pro! She continued until 1 year, just like the other kids. I have no idea if the breastfeeding has affected her IQ, but she is a pretty smart little cookie...so who knows? I have also heard that the average age for kids with Ds to walk is about 24 months. Emily was closer to 3, but she crawled early and FAST, so I think she wasn't motivated to walk since she was getting around so quickly. (and without any risk of falling!)
Oops, I keep forgetting those paragraph breaks!!!!!
Hi Everyone, How is everyone? We are still recouperating from Andrew's Birthday and taking it easy this weekend.Mary and Bill - I think it is wonderful that you are taking Spencer to Florida. I read your website probably a year ago or more and was very disturbed by the treatment Spencer has received. And I remember reading his dream to go to Florida. Go for it - God will provide and I think it is so great that ya'll can stay for three weeks in a private home. He will have the time of his life. Orlando is a great place to visit. I live in Houston, TX and have been there a few times. I can't wait to take my two kids but they are 4 1/2 and 2 and I'm going to wait until they are a little older. Have a grand time! I plan to get back to your website because I went in the other day and it has changed a lot. Keep up the good work.
Jackie, Emily is so beautiful and hope she keeps that gorgeous hair!!!! Keep the stories coming, I really enjoy them.
Ro, I was wondering where you have been, take care of yourself.
I can't remember who it was that asked about the teeth but Andrew didn't get any teeth until about a year and he just turned two this week and only has 10 teeth. He seems to be teething for months now but still nothing.
Shawna, I loved the men and women joke, Soooo funny!! Keep them coming. I read the post at work during lunch and enjoy a good laugh to help the day along.
I was wondering if any of the other Mother's here work full time? It seems like I am the only one.
Also, Andrew has stayed at home with Grandparents up until now and I was wondering if anyone has put their kids in a regular day care setting. He will go to the early childhood progam at 3 years old but I feel he would benefit from being with other children and am thinking about putting him in a Montessori school for three hours a day. Please let me know what you'll think. Thanks and take care, Andrea p.s. There must be another Andrea because that was not me who posted about the bad story.
hi alice and joyce, it is nice to meet other mothers that are new at this! i have two typical children, both teenagers so its been a long time, anyway, benjamin(ds) will be 1 yr an may 6, he has had really good muscle tone since birth which has alot to do with crawling, walking and even nursing! benjamin was able to nurse right away some may take longer but some typical children take time too! benjamin just started teething, he has the two bottom front teeth coming in. no fussing! today he got into a sitting position from his tummy! i was so excited! he is not crawling yet, but the therapist and i are working on it. as far as walking, i have been told that the average age for a child with ds is 24 mos. just like typical children, they all start things at different times and levels. i got to tell you though, when a child with ds reaches each milestone it is so much more exciting and overwhelming than a typical child! not to take anything away from our typical children, i just think things are harder for our children with ds.
Hi everyone! Yes, I've been a 'brief lurker' lately. Life is busy here lately, barely have time to check email even! Hope everyone is doing well in their corners of the world!Mary - GREAT for you for planning a trip with Spencer to Florida!!! What a wonderful experience that will be for him! And have the comfort that if, God forbid, he needs any medical care here in the states, we do have excellent physicians and hospitals throughout!!! (Hopefully you won't have to worry with that!) I personally think you've made a very loving, wonderful choice! Have you been to Captiva and Sanibel Islands in Florida? It's on the Gulf side, by Fort Myers - it is incredible!!!
Alice...FYI, I breastfeed Kelly (7 months), and will till around a year. What's funny now, though, is right after she was born, an older nurse came in to my room and looked me straight in the eye and said "you know, you'll have to nurse her till she's at least 3 or 4, cause that'll help her IQ to be normal and it'll connect everything in the brain". Needless to say, my jaw dropped to the floor, and my friend told me she'd pay a million bucks to see my face again. I was floored!!! 3 or 4 years old, my butt!!! Sorry, I totally believe in breastfeeding, but even my pediatrician got a kick out of that one! Use YOUR best judgement, and when YOU feel it's time to quit, then it's time to quit! (I have 3 older children as well, so I've been through this before :) ) That baby is going to do fantastic just having a mommy as caring as you!
Hey, Jackie - your Emily is beautiful!!! I just saw her pic, and you have totally renewed my confidence that Kelly can and WILL be just as pretty as the next gal! (That was one of my goofy concerns) And boy, I sure hope that beautiful hair stays right where it is!!! ;-)
Brenda H. - SOOOO glad you're Oky Doky! What a scare that must have been - be sure and rest up and take good care of yourself! Hope you have someone to pamper you - ((HUG)) from me to you!!
Tina, still missin ya, girl! :(
Have to share this with you all - Kelly had a speech eval last week. She flunked. :( Not really, but that's kinda how I feel. She scored 0 - 3 month range in Language comprehension and Language expression. I don't believe them!!! At least they did acknowlege some 'emerging' skills of up to 9 - 12 months! I must say, I was pretty bummed with those results. But, at least we have approved ST for once a month for now, and she thinks signing is excellent even when we have no hearing impairment to deal with. So, we're just staying positive!!!
Well, it's getting late, so I'm gonna run. Hope everyone that I missed mentioning is doing well (Ro, sorry about the back! Hope it's not serious!!)
Nighty night & ((((HUGS FOR ALL))))! ~~ Beck
The hair question,I've had the same problem with Olivia myself.But it's gotten a lot better.I think with her it's a sensory problem and a tad of a behavior thing.Anyways we had this prob with her washing her hair,brushing teeth,washing face,and last but not least brushing her hair.She's a really great kid behaviorally except for these things that's why I tend to believe it's a sensory issue.Well here is what we have done regarding the hair washing and brushing.When Olivia was having major fits when I washed her hair, I made up some little hair washing song that helped ease the tension a bit,but it still wasn't enough.I looked in her toybox the next day and saw an ernie stuffed swimming doll(she loves ernie) so I started having her wash ernie's hair while I washed hers and singing away.Well sure enough she started forgetting I was washing her hair.And we use baby shampoo and thermasilk conditioner it gets tangles out great.I guess she just needed 2 distractions.Well same goes for the hair brushing she brushes her favorite baby's hair while I do hers.(we usually try to do it while watching her fav sesame street)Now if I can time it right and Elmo's world's on then we have no prob's but it's made a huge different.Also if she does real nice in the bath we blow bubbles and let her blow some in the bath.Oh that Olivia had me batty with the hair thing and she's getting sooo much better.Good luck and fill me in if you find some brilliant solution that works for you.I'm very tired, my girl is sick.I've been up since 3 am last night.She woke up with a horrendous fever and having some breathing prob.'s.She never wakes up at night so when I hear her I pop up.Poor kid.She keeps rubbing her nose,it's like it's driving her crazy.I hope she has a better night tonight, I noticed those raccoon eyes appearing as I was putting her to bed.I am growing weary but want to stay up so I can sneak a peek at Jackie's Emily.I love hearing about her adventures.Nighty night.
Hi everyone,Can you tell me how many of you breastfeeded their DS babies do you believe that it effects IQ? Also I'd like to know where do you keep them untill one year old(I mean day care or home)? What day care is better(with regular kids of with DS)?
When DS babies start to walk?
Thanks.
When do ds children get their teeth. My daughter Arianna is 13 months old and does not have any yet.
Hello everyone,
I haven't had a chance to read any post today. We had to make a 3 hr drive to see the ped. eye doctor today. Needless to say it was not a good visit for us or Jared. We are now in the process of scheduling surgery on both of Jared's eyes. (Waiting on approval from our insurance co.) We thought that Jared only had one eye (right) pulling into his nose, but after the ped. eye doctor spent alot of time checking Jared, he showed us that both eyes were doing it. The only good news we received today was that his farsightedness had improved even from Sept. 99. Glasses & a patch are not the answer for the problem we are having at this time. I can't even begin to explain to you guys how I feel about this news. I cried almost all the way home (3 hr drive back).
Hopefully I will get some time tomorrow to sit down & read some post & reply. Hope everyone has a wonderful weekend.
Hugs!! Sherri
Hi guys!!I had the most stressful day today at work!!! By 11:30, I was so worried about how I could possibly get all my work done and I told a friend who I had planned to have lunch with that I would have to just stay and work right through lunch. When she came back, she brought me a book and I have to recommend it to all of you. (Turns out, she skipped lunch too and just went to the bookstore). It's called "Sometimes Miracles Hide" by Bruce Carroll. There is also a song by that title. If you haven't heard the song, I really encourage you to! I could post the words, but the music is beautiful too. The song is about a couple who is expecting their first child and the doctor calls to say that the baby has Down syndrome and they will have to choose what to do. The chorus says "Sometimes miracles hide, and God will wrap some blessings in disguise. You may have to wait this life time to see the reasons with your eyes...cause sometimes miracles hide". It's like he wrote the song for our family; although we didn't have to wait long to see what a blessing Emily was. The book is a collection of letters that were written by parents of kids with special needs in response to this song. Anyway, it might be a good book to add to the book club list.
Jackie, What a gorgeous graduate!!! She DOES have beautiful hair. I sure hope she will keep it! I would love to hear about her as a younger child. My Emily continues to amaze us and I hope she can be encouraging to parents of younger kids...just like your Emily has encouraged me. I'm so glad your sister's surgery went well!!
Cindy, loved the zoo pics. Emily's class is going to the zoo May 18th. We live halfway between Nashville and Knoxville and there are zoos in both cities, but it has been about 3 years since we've gone so we are really looking forward to it. Also, she is in a play at school next week. They are doing the Little Red Hen story...is that the one where the hen can't get any help to bake bread? I think that's the one. Emily walks around the house reciting "who will help me BAKE the bwead"?????
Vicki, My daughter was born with a head full of hair and we've always kept it long. You may have already tried this, but I have experimented with various shampoos and conditioners. I use baby shampoo and Matrix (Biolage) detangling conditioner. (plenty of it!) Then we sit in front of the TV while I comb it with a wide-toothed comb (like the kind of pick you use with permed hair). It helps when she is watching TV and doesn't think about what I'm doing. I know you don't want to cut it, but frequent trims will help her hair be less tangled. Hope that helps!
Goodnight, and hugs to all! Susan
Hi, Everyone told me if I posted on the message board I would get lots of responses, so here goes. I have a 3 1/2 year old daughter with down syndrome. She has this beautiful long blonde hair that I refuse to cut. My problem is she hates to get it brushed. It has become a bigger and bigger problem trying to brush it in the last month. She throws herself back and gets her hands all tangled in it and has a temper tantrum. I'm not sure if it's a behavioral thing or a sensory issue or both. Any suggestions other than cutting it?
Jackie- WHAT A GREAT GRADUATION PICTURE!!!!! Emily is so beautiful! Glad to hear your sister is doing okay despite the surgery. I just can't get over how great that photo is of Emily..everybody go check it out...I posted a couple of Kaylee's zoo pictures too, but our camera is crappy (to put it bluntly) so the photo's aren't that great... :(Thanks Michelle for getting those on so quick...Casey's photo is so great too, (and his brother, but just can't remember his name right now) and we're all jealous of your digital camera at our house!
HiHome for a couple of hours. My sister did fine...all thoughts and prayers must have worked. No more ovaries and NO cancer. She's got a great sense of humor and was so dopey and sooooooooo funny. Thought she was talking to us in the back yard and kept flicking "ashes" from her cig into the "irises"
Jackie
Helloooooooooo!!!! TGIFI went to my monthly prenatal appt today. All is well. Next time they will do the REAL ultrasound. I snuck off to the hospital and had another unoffical one from my best friend. The baby looked like it was sunbathing in there LOL. It was on it's back with it's legs up. We couldn't see the "important" parts to see if "she" was wearing a bikini or "he" was wearing swim trunks. Maybe next time.Stacey - Have fun on your date!!!!!
Lorena/Clark's mommy - Yeah to Clark for walking. I can't wait for Russell to be there!!! I still have some time though. Russell is getting his hearing tested probably in may sometime. Our PT recommended it. Russell puts his ears up to things to hear them. She says he either REALLY likes to hear things or it is a sign that he can't hear certain sounds. I have heard that from a friend of mine also who works with special children.
RO - What an Easter!!! You tell the best stories!!!
Susan - OUCH!!! Sounds like that would be when I would stop breast feeding! LOL I never got that far with my daughter Regan, but she wasn't a biter either. Russell I never breast fed but he sure does enjoy biting me!!!!
MichelleMC - Keep me posted about new shirts too!! I would love to know how to get one!!!!
Well, I am going now!! I hope you all have a great day. I will be back later probably!!
Adrienne
Good Morning Ladies!!
Ro and Brenda H, take it easy today and this weekend!!! I will be praying for you and sending (((HUGS!!))) Get Well!!
WTG Clark, hope you have good running shoes Mom!! :) How old is Clark? Brooke, 2.5years old is starting to walk well now!! :) I thought this time would never come! Hurry up and wait. Right. :)
I hope you all have a wonderful Friday! I'm spending my day cleaning house, but tonight......tonight I have a sitter and my hubby and I are going on a date!
Love you all Stacey
Hey Everyone !!!! Did you miss me ??? I have missed coming to read the post and post myself. I hope that everyone had a wonderful Easter. I still am having a problem with my computer so I can't get on to the web when I am at home( I am at my friends house) Hopefully soon I can get it fixed..It is really being screwie.Clark is making great progress walking. He is taking two or three steps by himself but still not doing it all the time. We went to see Pat Winders PT at the Kennedy-Krieger Instatute in Baltimore. She said that he is doing everything that he needs to do to walk but she feels that he is very motor driven so he doesn't want to slow down to walk when he can butt scoot so much faster. She said he is oone of these children that will take off one day when you least expect it. She always makes us feel so much better. She is just a super lady...if you ever have a chance to hear her speak go to it.
Clark had a hearing test on Monday and we got really good results. He has no hearing loss and is in ther normal range. Getting the tubes really helps !!! He is also breathing so much better due to taking his adnoids out. WOW what a difference that that made. He is starting a transition group at the developmental center next week...I will have an hour of free time...maybe I will go to the libaray !!! write letters or just veg out in the waiting room.
Brenda H (I think) I am so glad that you are doing better !!! When Sherri emailed me to tell me i said a prayer right then !!! I still am keeping you in my prayers daily. Sherri has been keeping me updated on everything since I am cut off from the web..it really stinks...so you all email me !!!!! I am lost with out my daily visit to unomas!!
Everyone take care of yourselves...I miss you !!!
Hugs, Lorena Clark's Mom
Mornin'I'll be more careful this time
Ro....loved the Easter bit. The eggs were too funny and I can relate to the motel, too. My kids have always sworn that their Dad can stuff more people in one room than clowns in a car at the circus. He mellowed a few years ago after a trip to Disneyland where he found 3 curling irons plugged in.....one on his watch crystal! Ro, I too, would like to hear more about YOU because I love your posts and am sure you must be a fun person. Ed tried to show me how to post a pic of Em. Of course like most men he ended up doing the whole thing and I'm as much in the dark as I was before about how to do it. He started showing me how to do funny things like distorting it and decided to have me send it in that form to one of her sisters. Just HOPE he sent it to UnoMas the right way. It is a year old...her Sr. pic and a really nice one....of course, it was 50 lbs. ago :(
Well, off to the hospital. My sister had to be admitted at midnite because that's when the insurance for the hospital day starts...too weird!
Oh yes, the "mystery" surrounding Mystery is still a mystery.
Have a great weekend everyone.
Jackie
Rats!!!!!!!!!Lost my whole message by hitting the wrong key :(
Ro- Too funny, sounds a bit like our Easter weekend too, still recovering. HOWEVER, we didn't get to enjoy the raw eggs!!! That is too funny. Hope you're better soon. We were all beginning to wonder....
Where oh where has RO been?:)Lets see
Where to start, hmmmmmmmmm......
Okay
Last week I had an invite from my dad to do the easter bunny at his house:)
SO........
Ro packs up her little FORD pickup which by the way is 3/4 ton, small only by trucking measures, and toddles her way south to Aransas Pass:)
We arrive there before nightfall with all the easter bunny eggs and baskets and rent a D*** motel:(
The bed was awful. I am being kind:) IT NEEDED A TORCH TAKEN TO IT:) I feel much better just saying that:)
We all prep for the easter bunny and go to the motel and put the kids to bed and then the fun starts:(
Next morning I "ROLL" off the bed only cause I can't stand and "CRAWL" to the restroom. Hadn't done this in a long time.
When I finally get to my feet I am stuck in "LAWN FURNITURE" all day.
The easter bunny came and left fantastic prizes for the kids :) Bubbles, jump ropes, plastic easter eggs with candy in them, as well as a few suprises:) 12 surprises to be exact:)LOL
After they had gathered the eggs and were counting the loot:) Surprise number one was found:)
Ro had 4 dozen boiled (i thought) and dyed eggs for the kids to hunt. Somehow we had gotten 1 dozen eggs unboiled eggs and dyed them and hide them and found out when Delano tried to crack and eat one:)LOL "SURPRISE"
We all had a good laugh and a great day:)
I came home that night flat in the seat after taking a muscle relaxer just to get home. CARRY ME OVER THE THRESHOLD BABY:) I was out:)
Tomorrow I will tell ya more I have to go to bed now:)
Ro
Brenda H.,
I can't even tell you how worried I was!!!..was kickin' myself (literally) for not having a phone #..we will have to remedy that.
You and your family were on my mind the entire trip..:-)
And thank you soooo much for your condolences also..it was a quick trip..we went from Ks. to Mich. and back to Ks. all in less than 2 days..4 planes and longer lay-overs than hotel room time..but we got through it and are home safe and sound and you are such a sweety to even worry about me.
You better be resting, and I hope to catch you soon..and to everyone else,
I am sooo sorry to cut this short..'won't even pretend to be able to catch up...but..
Ro, I did see you are having back trouble and you better take it easy too, what are we gonna do if you can't sit at this 'puter???? miss ya, darlin..;-)Stevie Marie had her retina-scope today..and we will pick out glasses tomorrow or first of next week, depending on what comes up in the mean-time..LOL
Miss you all bunches, and hope to be more 'regular' here again soon..
*hugs* and *happy thoughts*~~Tina
Dear Mary(from UK),I am very glad to have your message, thanks for understanding.
I think that it is good idea to bring Spencer to Florida. Good luck and have fun. Thanks to everyone who gave me support(your are all so smart and kind people), but dear girls I need time tobe comfortable to make conformation about Luke's DS.
Ro, I read your messages every day and it seems to me that you are big fun of this site. Could you please tell me your story?
Good luck to all or you and your kids.
Good evening everyone!!Adrienne, I remember the biting phase all tooo well. We dealt with biting from Emily, but even more from her older brother Justin. He began at around 10 months and continued till he was about 18 months old! He was breastfed, and had me in tears many times! I never could figure out why he was doing it, but we always handled it basically the same way the other mom's have mentioned. Not a lot of emotion, just a very firm "don't bite" and then a short period of some type of time out. What we did not do was to bite him back. I never did understand that, but many of my friends recommended it. When Emily was about 2, she had a very brief period of time where she would bite...mostly her newborn brother! He would fall asleep in his swing; so peaceful and sweet. And before you knew it, he would be screaming at the top of his lungs and Emily would be crawling away as fast as she could go. I can't remember if it was her ST or the OT who recommended it, but we got some soft tubing...like the hose from an aquarium. (It's about as big around as a finger). We tied a few knots in it and let her chew on it. Seemed to keep her mouth occupied and helped with the drooling. Before long, the episodes of biting became less and less frequent.
Michelle Mc, Thanks so much for the adorable t-shirt. We got it in the mail today. What will the new shirts you mentioned be like? I loved the new picture of your boys.
Brenda H, Glad to hear you are home. Rest and take care of yourself. You are in my prayers. : )
Mary from UK, Sounds like such a wonderful experience for Spencer! I would definitely take him. It sure sounds like you have made preparations that will make it easiest and safest for him. Take lots of pictures...I'd love to see his smiling face!
Lori, Do you live near a university? We have used college students as babysitters before and have been very pleased with them. We have advertised for sitters at the college in the area where there are elementary education majors. And sometimes, you can find a college student who is majoring in special education ( or maybe a nursing major) who would love to learn more about children with Down syndrome. Unless the sitter has a set price, we usually pay $2/hour per child.
RO, Does your little guy still have his cast on? We are counting down....4 more days! I was making lots of plans for a weekend out of town at a hotel with an indoor pool, then remembered that Jordan couldn't swim. His arm is now a bit smaller and he suggests that we just pull the cast off, let him swim and then put it back on. NOT. He is the first of my 4 children to ever have a broken bone. It was so hard to see him in pain. When Emily was about 4, she was standing in line at her preschool to go to the bathroom to wash up for snacktime and the heavy bathroom door got closed on her finger...completely closed inside the part of the door where the hinges are! I still cringe when I remember that.
Radonna, I know you aren't home, but you will probably read all the posts from the time you were gone. I miss your emails!! Hope you are having a wonderful time!
Shawna, Loved the men/women joke. Funny, but true! I'm sorry about your experience with your daughter's teacher. It's interesting, because usually I hear teachers complaining that most parents fail to discipline their kids or to teach them responsibility and that they (the teachers) end up having to do it. It sounds like you are doing exactly the right thing. However, I think I would encourage the teacher to pick a private time to talk to you next time. She may have the right to her opinion, but not to question your decisions as a parent in front of your daughter.
Better run. Susan
Brenda, Bet it was a scarey time for you!! I'm so glad that your back. Hope your feeling better everyday!! ((((HUGS)))) your way!!! :)
Hi everyone ,Just wanted to let you know I'm home and getting along good,And to thank all that remembered me in prayer,Or just sent them good thoughts my way.Sure was a scarey time ,Still Is. Got home around 2 today.Well I'm really tired out,They say it'll be like that for awhile. So gonna go lie down.Tina thank you for requesting the prayer,Couldn't ask for a better freind ,Read a little before I posted and I'm sorry for your loss,And hope you had a safe trip.Brenda
*******CHAT TONIGHT******
Okay I should have proofreadAllisa I gotta tell you I do LOVE my clothesline!! LOL
Evening All.Stacey: Isaac is 19 mos. old. HE has about ten signs that he can be counted on to use correctly and about ten words. I can't wait to hear him start making animal sounds. Your little girl sounds just too precious.
Allisa: I gotta tell you I do you my clothesline. Nothing beats crawilg into a bed with sheets fresh from the outside. I haven't given up all my Modern conviences- I still use the drier for most things-and I haven't resorted to beating my clothes on a rock. LOL Could not live without the dishwasher-cram everything in there.
Hi Adreinne, thanks for checking in girl
Toodles for now!!!!
Hello All. Happy Thursday!!! I worked until 2:00 today. My boss hired someone that will start next Monday but she said she is keeping me for awhile!!! I have my monthly prego appt tomorrow morning!! Maybe I can sneak and have another ultrasound from my girlfriend!!!Steff - Olivia sounds so darn cute!!! I bet she had a blast at Earthday!
Jackie - I hope everything goes well for your sister.
Mary from the UK - That must be awesome to know Spencer can fly to Florida. I say GO FOR IT!!. Your post brought tears to my eyes. The way I see it, if you are concerned with not having much time with left with Spencer here on earth, than take him to Florida and see him "light up" with joy from the experience. I can understand your angst but I am one who would rather be knowing I have "done" in life instead of wondering "what if". It sounds like it will be a truly beautiful and fun experience for all of you!! I wish I could be a fly on the wall!!!
Heather - thanks for the biting info. I don't think Russell is doing it for a reaction. (I don't think at least) I don't think he is mentally there yet. How old it your child? I try not to make a big deal except I say no firmly and move him away from me.
Teresa - Speaking of biting... Sounds like you and I are in the same boat!! Your situation sounds sooo like mine. How old is Jessica? Does she have alot of teeth? Russell is two but mentally only 10-12 months. I wonder if it is because Russell has so many teeth. Some DS children get their teeth slowly and not in order but Russell has 12 teeth and two more coming in. His has alot of teeth for his age. And they are all where they should be. I don't think he knows what they are for. LOL Except for biting me!! I have a bruise from where he bit me yesterday when I was typing on Unomas. He bit my shin!! I will try to see what we can do for them. Maybe the Regional Center has a book on behaviors and special needs children that will help me. Let me know if you come up with anything too!!
Anyone else with biting help or stories... Let me know!!!
Well, I have to go now. Have a fun evening all!!
Adrienne :>
Hi
Hi. About the rude post on the "my story" page ... are you referring to the one with a wierd name and then a few lines of jibberish? I'll remove that one, but is there something else I'm missing?Regarding the new logo-wear: I think I'm about 2/3 of the way to having the money I need to order the new stuff and pay the screen printer. I'm hoping to get there by June. (I need to order a certain quantity, or it will just be way too expensive per item).
Michelle
Hi everbody!!!!Alissa, I also love to go to our monthly meetings.The parents who run it are great.We've had awesome speakers and our kids all play together in a seperate room with childcare.It's good for Kyle to be exposed to all types of children of all ages as well.I've noticed that he's very good about looking at people who have speech prob's and remembering to speak clearly and a little slower.Oh by the way Kyle is Olivia's big 3 year old bro. It's also just nice talking to other parents.We've helped each other out so much with really useful info.(different services our children can get that isn't really told to us by our regional center workers)Gives me a break too cause my hubby's out of town a lot!!!!
Spencer and Mary!!! CONGRATULATIONS!!!!Florida's a blast. I spent a month and a half there a couple of years ago.The beach is my place. I've always felt such peace there.I can always feel the presence of God looking out in the horizon.Enjoy....
Well everything is going well for us.No drama...ahhhhh.I took Olivia to school today and I'm so pleased at how she's doing.She goes right in takes her shoes and socks off plays,cleans up when it's time and goes straight to the circle when it's time to sing.She just sit's there and sings her heart out.She's got the routine down and doesn't have a hard time transitioning in and out of activities and rooms.I was real worried about that when she started new school.She had spent so much time in the hospital that she was soooo clingy and had serious mommyosis.Now you'd never know it .Her therapists have done a fine job.It's amazing how much your child can change once medical issues are resolved.What a turn around.She went from not even reaching out at 6 months(due to subclavian vascular ring) to climbing up ladders, running, etc.So all you new moms out there's light at the end of the tunnel, you just gotta give it time.
Something cute.Last weekend we went to Earth Day in downtown L.A. We had a blast there's tons of things for the kids to do etc.Well my hubby took our son to the bathroom and me and Olivia sat on the grass waiting for the band to start.People were having picnics and sprawled all over the grass.Olivia decided she had to talk to each and every one of them.No joke, she must have went to see about 15 different people as they relaxed on the lawn.She'd walk up say hi and wavesit down scoot her butt over so she's real close and just YAK.Next she'd try to go through whatever bags they had with them.That's where I came in.I'd stop her from doing that and she'd move on to the next person.People were watching her cause she's so funny and lots of expressions. She always manages to really be on when she's around a lot of people.We have a new title for her she is now the "Goodwill ambassador of our family.LOL.Thought I'd share .Hope all is well with you and yours.Steff
Michelle Mc.I tend to agree with Andrea could you please delete that entry on the page "YOUR STORY".
Any word on the new shirts or are they still in the works My wardrobe needs some new items:)LOL
Ro
Hello everyone!My husband and I went to a Down SYndrome Parents Group last night. They meet once a month at the Early Intervention Center and usually have guest speakers. It was nice to meet other parents in the area and there was another mom there who has a daughter just about Erin's age !!
The guest speaker they had last night was talking about Financial Planning for the child with Special Needs. So much to know !! Erin is only 2 months but my husband was taking notes and planning !! They said the one thing to come away with last night was to have some sort of trust in place for your child and have nothing financially in their name. They could lose so many benefits available to them. He had horror stories ..... One man had a daughter with special needs and she had special education and busing for 12 years. Well one day after cleaning out the basement they found a $600 savings bond someone had given them at her birth. It had been forgotten about and like I said down in the basement for years. Well when they cashed it, social security came to him and said had they known 12 years ago about the bond, she would not have been eligible for the programs she had been involved in. Therefore, he owed them over $ 300,000. Appearantly he had to sell his home and lose everything. They wanted their money in 90 days !!
They had nothing kind to say about the folks at Social Security in general.
Anyways, I have been catching up on posts and I have to ask Brenda ..... Do I understand that you PREFER a clothesline to a drier??? I am very happy with all the "modern conviences". And yes, the PT and all other therapists do come out to the house. It is great for us because it would be very tough to work with the schedules of my other two. She comes at 11:00 in the morning when my oldest is still at school and my 2 year old is napping.
Jackie, hope all goes good with your sister Jeanette.
Lori, I hope you work your babysitter dillema out. We need to get a reliable sitter, too. But it is so hard to entrust someone else. Luckily we have a lot of family in the area and some great friends, but we really need to get one person we can rely on. There is a college very close to us and I have always wondered about posting something over there. The going rate for high school kids around here is $5 an hour and an additional dollar per child. College age I assume want more. Church is a good place to inquire or if your town offers a babysitters course to the teenagers, they ususally have their names on record.
Colleen, glad to hear your sister has so much support from you and other family.
I am being "called" by Erin so I gotta run... she sounds hungry!!
Allisa
Hi everyone!!
I'm afraid I have been mostly a lurker lately. :)
Mary take Spencer to FL. We will be praying for you all, God will not forsake you, to have the funding for such a trip is a blessing in itself, Have fun, and say hello to any relatives of mine you might run into. :)
Shawna, WTG staying strong on the lunch thing. That teacher must not have kids, I know mine will try to get away with not helping out, nothing worse then getting all the way to school and being told someone forgot their lunch or snowpants.
Lori, I pay my sitter about $1.50 an hour per child, She is a highschool student and does a great job with all four of my girls. Do you belong to a church or have a close friend that is? Finding a sitter that is reliable is hard, having contacts through church can help though. You could also ask the high school councilor to recamend someone, they may be able to recommend someone going into the fields of early childhood education, or therapy. I hope this helps. :)
Brenda, how old is Isaac, WTG ISAAC!! Brooke can sign cat and says meeeooww, to cute! Brooke is 2.5 years old.
I hope everyone has a great day!!
Stacy
Teresa & Adrienne - Nicholas used to bite all the time, here is what worked for us. We wouldn't say "Ow" or give him any reaction, we were told was the reason he was doing it. But we would say "No biting" and put him in "time out" (depending on how old your kids are, if too young, just sitting them down away from you and don't give them attention for a bit). He eventually caught on. Hope this helps!!
Hi everyone. I haven't posted a message on here in a long time! My neice Abbey was born in Feb. 99 and I found a lot of good info and support on Uno Mas. I was just reading the posts this morning and was so happy to read some info about programs in Kansas City. Abbey was born in Denver (just 2mon. after her family moved from KC) and although I was sad they were so far away I could not help but think God had sent them to Denver for a reason and that it must have the best programs for Abbey. Well now they are coming back to KC-Yea!!- next month. I am so glad that Abbey and her 5year old brother Alex will be with their cousins again. They are all so close. There are 9 kids in all ranging from 14 months(Abbey) to 8 years...and there are 2 kids on the way-one of which will be Abbey's baby brother! Anyway I really feel that being with all of her cousins and family will be so good for Abbey and for the other kids as well. They all love each other so much. It is just an extra bonus to hear that there are great programs available for her here too. My sister has contacted Children's Mercy. If anyone knows of a great doctor or any other groups for my sister to check out in KC please let me know. Thanks!!!! Colleen
Will someone erase the rude entry in the 'your story ' section? It has been there for a while. No big deal, I just don't like to see it.
Hi everyone hope your day is going well. Isaac is still a bit croupy and now has some eye drainage to go with it, lovley LOL . The weather in Ohio is getting better so maybe some of it will go away, heck maybe all of it will go away. Isaac is learning new words left and right- I think he is up to about a ten word vocabulary now. It is so awesome. His latest is kitty to sweet.Alisa: Glad that your PT appointment went well, are you lucky enough to get them to come to you? I agree little acheivments are the best
Sherri: Sounds as though your Dad is having a bit of a rough time right now. We'll say some extra prayer for him and your Mom hoping all begins to turn around real soon for your family. ANd Jared high five Super Dude!!!!!
Mary: I agree with the majority here, We will be listening for the shouts of joy for up here in Ohio ((((HUGS))))
Oh Jackie, I love hearing about Emily's adventure's. I also hope her ahir makes it :)))
Have a great day everyone. OH I forgot I have some good news. My Husband finally got my clotheslines up. No more drier. Boy you can tell I'm a stay at home Mom> LOL
Ro-thanks for the heads up, got it purged.Mary - Spencer's mom- I think you're doing the right thing too. And please know that we will all be praying for the trip and Spencer's health concerns. We certainly have a lot of people around here that believe in the power of prayer. Just remind us when the trip is planned for??
Shawna-I think you're doing the right thing-and by the way, does the teacher critisize you in front of your daughter? The teacher seems to be attempting to erode the authority that you have with your kids, and I for one would be VERY upset.
Jackie-geesh I hope Emily doesn't shave her head! Yikers!!! That's all just too funny..keep those stories coming though..I really was so encouraged to read your story of how you found out about Emily having DS. That was just great that they were so positive. Me? I was told by the nurse in NICU when Kaylee was 2 or 3 days old that she had just "lost" a baby (she was pregnant)and test's showed that the baby had DS-anyways-she said "I am so relieved that the baby died because I just couldn't have handled a child like THAT right now..I just got remarried and we're building a house and blah blah blah..." I was 27, first child. She was the HEAD NURSE in the NICU-in her mid 30's. I was shocked that she unloaded on us like that, but her main reason she said was because Scott and I were "handeling it all so well". We just told her that we had great faith in God and didn't believe that Kaylee was a "genetic mistake" as the genetesist said-but that God was her Creator. Not to say that I haven't struggled with the question of why God allows people to have disabilities, but I do trust God. Geesh I'm rambeling...
hope everyones well. We had a field trip to the Zoo yesterday with 60 kindergartners. Great time had by all. I'll post the pics as soon as I get the film developed. We went to pizza last night with friends and the guy taking the money specifically wanted to talk to Kaylee. Seems he had a brother with DS that died at age 3 from drowning-the older brother being 9 at the time. Anyways, he gave Kaylee free pizza and said "you guys come back real soon, K?" I invited him to stop by unomas and meet everyone. I think his name was Erin Thomas, so if he stops by you all be nice, ya hear?
Help!!! I am looking for advice from other parents on how they went about looking for in home child care. My mom currently babysits for my 18 month old son Joshua, but would like to cut down to 3 times per week. I am interested in getting someone to come into my home approximately 2 times per week from 4 pm to 8 pm to take care of Joshua and put him to bed while I am at work. If anyone has any advice I would greatly appreciate it. I am looking for someone high-school age or older. Lori P.S. Does anyone know what the current rate of pay for babysitters is?
CINDY
Darling be a dear and purge the chat someone messed it up yet again.
Thanks so much sweety:)
Mary / Spencer's mum
I have to agree with everyone else. Take Spencer & go to Florida. Make his dream come true!! I will keep you guys in our prayers for a safe, fun-filled trip. Keep us posted on how Spencer is doing.
Hugs!!
Sherri & Jared (32 months)
Sorry, I didn't proofread the men and women thing, I would have taken off the Yahoo thing at the end - although Yahoo Messenger IS REALLY GREAT!! If you get it, I am mrs_talk2much!!Shawna
Good morning, ladies!I'll warn you now, I only had a few minutes to scan the posts, so I apologize in advance.
MY hubby is leaving for work for the spring and summer in a few days, so my life is just A LITTLE busy LOL. Add to that kids not taking lunch to school, teachers giving me a hassle, and various meetings (this week we have 4!), a newspaper column, helping my son learn the lines for his play, Michael and his constant supervision, work, meals, laundry............ Life is quite busy right now. You may not hear from me for a few days. LOL
An update on the Jennifer breakfast-and-lunch situation. We live close to the school, so she will not be ALLOWED to go to school until she has eaten breakfast, cleaned up her dishes, and has an adequite lunch prepared. I'm waiting for the day she dawdles and ends up late for school!! She hates being late for school, so that in itself may motivate her to make sure she gets her lunch and breakfast. If the teacher doesn't like my solution, that's too bad :(frown!
A quick addition................
MEN & WOMEN-SOME DIFFERENCES
NICKNAMES
If Laura, Suzanne, Debra and Rose go out for lunch, they will call each other Laura, Suzanne, Debra and Rose.
If Mike, Charlie, Bob and John go out, they will affectionately refer to each other as Fat Boy, Godzilla, Peanut-Dick and Schmucko.
EATING OUT
When the bill arrives, Mike, Charlie, Bob and John will each throw in $20, even though it's only for $32.50. None of them will have anything smaller, and none will actually admit they want some change back.
When the girls get their bill, out come the pocket Calculators.
MONEY
A man will pay $2 for a $1 item he wants.
A woman will pay $1 for a $2 item that she doesn't want.
BATHROOMS
A man has six items in his bathroom: a toothbrush, shavingcream, razor, a bar of soap, and a towel from the Holiday Inn.
The average number of items in the typical woman's bathroom is 337. No man will be able to identify most of these items.
ARGUMENTS
A woman has the last word in any argument.
Anything a man says after that is the beginning of a new argument.
CATS
Women love cats.
Men say they love cats, but when women aren't looking, men kick cats.
THE FUTURE
A woman worries about the future until she gets a husband.
A man never worries about the future until he gets a wife.
SUCCESS
A successful man is one who makes more money than his wife can spend.
A successful woman is one who can find such a man.
MARRIAGE
A woman marries a man expecting he will change, but he doesn't.
A man marries a woman expecting she won't change and she does.
DRESSING UP
A woman will dress up to go shopping, water the plants, empty the garbage, answer the phone, read a book, and get the mail.
A man will dress up for weddings and funerals.
NATURAL
Men wake up as good-looking as they went to bed.
Women somehow deteriorate during the night.
OFFSPRING
Ah, children. A woman knows all about her children. She knows about dentist appointments and romances, best friends, favorite foods, secret fears and hopes and dreams.
A man is vaguely aware of some short people living in the house.
THOUGHT FOR THE DAY
Every married man should forget his mistakes.
There's no use in two people remembering the same thing, is there?
Hope you liked it!
Ciao for now.
Shawna
PS - I love "cut and paste"! __________________________________________________ Do You Yahoo!? Talk to your friends online with Yahoo! Messenger. http://im.yahoo.com
Mary.......Silly Me....there is your website right underneath your name! What a lovely site...I'm still trying to figure out how to post a picture. Jackie
Mary from UK - I truly feel you are doing the right thing for Spencer. If this is something that he has always wanted to do then I think it is great that you are going for it. I have been to your website and know all the struggles you and your husband and Spencer have gone through, it is time for you guys to relax and have fun. I know you will have a great time and I will pray that everything goes well with your flight.Mary L.
Nancy___ About the friend of yours that is having trouble getting the baby to take a bottle. We had the same problem with Kellan. He was born with EA and didn't eat by mouth for about 2 1/2 months, so it was hard to even intrest him in a bottle since he had been tube fed. We were told to be patient with him and spent a lot of time feeding him. They(Dr.s) said to support his chin a little while he was eating--put a finger under his chin and very gently support it. Also we held his cheeks in a little to help close his mouth around the nipple. If he would start to act like he wasn't intrested we put the nipple up toward the roof of his mouth instead of taking it completly out of the mouth, this seemed to help him close his mouth back on the bottle.It is still a battle some days to get him to eat, he takes a little more than 1/2 of his feedings by mouth. He still has a G Button that we also use. He has come a long way. If your friend would like to E Mail me I'd love to visit with her about what she has tried and see if she has any new ideas for me!!
Hi AllMary.....of course you're doing the right thing! As Garth Brooks sings.."Life isn't tried it is merely survived if your're standing outside the fire" I've always believed in living life to the fullest and that often means taking risks. I wish we lived a bit closer so we could share some of this with you. I'd love to meet you, Bill and Spencer! I've never been to Florida either. You keep referring to Spencer's story....where is it posted?
Sorry to hear moms are having trouble with biting. Never was a problem for us..Em got her teeth so late and in such bizarre order that I probably would have been EXCITED if she could actually have bitten anyone.
News Flash from ENMU......(no, we do not own a mop yet) but,....Mystery has shaved her head! Yes, you read that right...Mystery. She was the first person we met when we took Emily to school in New Mexico last Fall. I'm not sure exactly what her disability is (partly attention deficit)but in the first hour we spent with her she told us her whole life story including her adoption and death of her step-father while he was "doing it".....As Emily Kingsley says in Trip to Holland when you have a child with a disability you often go a lot of places you hadn't planned and meet a lot of people you hadn't planned on meeting! Anyway, Emily is unsure why Mystery is bald today. Let's just hope it is not the latest college trend. Emily has beautiful hair.
I may be taking a bit of time off from UnoMas. My sister (2 yrs younger) is having rather major surgery to removal of a suspicious ovary tomorrow AM. If all goes well it will just be a 3 day stay and then home. She had cervical cancer 25 yrs ago so is understandably apprehensive. She is also a heavy smoker so maybe this will be her incentive to stop. Anyway, a few prayers this weekend would be nice. Jeanette is my very best friend.
Jackie
Oh Mary, I'd take Spencer to make his dream come true. They have that org. called "Make a Wish". I think it is the same thing for your Spencer; you are making his wish. You also must know that we will be praying for him, don't you? Don't fear, but trust in God. He has Spencer in the palm of His hand. He always has.
Hi, ALLFirst let me thank every one for commenting on my last two posts (Spencer winning the holiday) and my denial experience.
Alice,
The time WILL come when you will feel ready to tell people and be proud to do so, it took me 14 months, as I too was hoping that the doctors had made a mistake. You will do this in your own time.
I also wanted to tell you all about Spencer's escaping episodes, but it will turn into a long post so I will leave it for another day
The main reason I posted today is that we have received some GOOD NEWS.
All of you who know Spencer and have read his story will also know that Bill (my hubby) and I have need trying to get Spencer to Florida for the past 10 years, and our Oxford doctors have always told us NO WAY can Spencer fly to America because of his heart and lung problems, the the flight would be to dangerous for him to manage.
This has been our one and only dream for Spencer (as we have already done everything possible to make his 26 years fulfilling)
Well the good news is that our new doctors in London have said
YES SPENCER CAN FLY TO FLORIDA
So we have booked a date June 6th , We will be flying with Virgin Atlantic and will be staying for three weeks in a rented private house in Orlando (with its own private swimming pool)
Spencer will need special things on the 9 hour flight, like oxygen, and loads of fluids, and leg movements ect, ect
SO FLORIDA HERE COMES SPENCER (you will all probably hear his loud voice all over America LOL)
Spencer is really excited about going and so are Bill and I, BUT now that we have booked and paid for it all, Bill and my stomachs are lurching, with worry about Spencer's well being on the flight.
I am asking ALL my friends in uno mas. Have we done the right thing???? Are we asking God for to much??
Bill and I both know that we only have a short time left with Spencer because of his illness (heart and lungs)
So what do we do?? sit back and do nothing and just keep on taking Spencer for hospital appointment after hospital appointment, knowing that there is nothing any doctor can do except make him comfortable.
Or go for it NOW and fulfil Spencer's dream???
We would love to hear your views on this my friends.
HUGS to you ALL and God bless
Mary and Bill
Another mom in our town has a 4 month old daughter who had heart surgery one month ago and is having trouble getting her to suck on the bottle. She has to get fed with an NG tube now and was prior to surgery, too. Any ideas would help her, the baby has ds.
Adrienne, I know what you are going through. My Jessica does the same thing. At first I thought it was a stage, but this has been going on for along time. I have noticed that if I am notpaying any attention to her she will bite(OOCH!) Then I noticed when Jessica got excited, she would bite. Now, she bites just out of the blue! My oldest daughter, who is 5, has been a victum as well. But you know Jessica does not bite DADDY. Go figure, I don't know what to do, myself. Let me know if you find a way to stop the bitting! I need help too. Jessica, I think was a dog in a previuos life, (this sounds very bad) but she licks, BITES,and chews everything in site. I don't know what to do.. Anyone have any advice????? OOPS! I think I reposted the same message SORRY
Adrienne, I know what you are going through. My Jessica does the same thing. At first I thought it was a stage, but this has been going on for along time. I have noticed that if I am notpaying any attention to her she will bite(OOCH!) Then I noticed when Jessica got excited, she would bite. Now, she bites just out of the blue! My oldest daughter, who is 5, has been a victum as well. But you know Jessica does not bite DADDY. Go figure, I don't know what to do, myself. Let me know if you find a way to stop the bitting! I need help too. Jessica, I think was a dog (this sounds very bad) but she licks, BITES,and chews everything in site. I don't know what to do.. Anyone have any advice?????
P.S. - HOW DO I GET RUSSELL TO STOP BITING ME!!!!!!!!!!I need help! I trying saying NO firmly. I try the NO with my finger touching his lips thinking he will understand I am talking about the biting. I try to remove him... It isn't helping. He has been doing this for a few months now and it doesn't seem to get better. He bites me alot more than he does Kevin. Sometimes he does it because he is over happy and excited and other times like just now, He just came over and bit my leg with no emotion. I knew he was trying so I kept trying to keep him back but he got to my leg anyway. Earlier today, I felt like I was dealing with dracula! He wants to hug and stands towards me. But he kept turning his head sideways and going for my neck. It's funny when you think about how it looked but I kept having to push him away. Or set him down, but he kept wanting to play the dracula game. I need some advice!
HELLO ALL!!!!!!!!!!!!!!How's everyone!!! I came online Monday evening to get caught up and read for a while but my computer screen turned a deep shade of purple so I had to get off. I haven't been on since. I tried to read some just now but I would have to be here a while and I want to finish picking up my house. Actually, that ever dreaded laundry!!!
I worked Monday and Tuesday. It was real neat. They all missed me! My boss gave me a raise since I am only part time right now. That was really awesome of my boss. She is a great lady! I will work part day tomorrow also. I thought I would forget procedures and what have ya but It all came back!!
I was reading here about some of you mentioning responsibilities/chores and children. Regan is seven and she helps us with putting the laundry away, taking the bathroom trash out and helping with bringing in the groceries. She doesn't have set chores except for cleaning her room before she goes to bed each night. She isn't to keen on the cleaning thing, but none of us are here, we just do it!! I try to explain to her that families that love each other stick together and help each other no matter what. So we all help each other around the house. She has asked more than once if Russell will ever help us. She thinks because he is two yrs biologically that he should be helping us. I have to explain that he isn't ready yet. I think she thinks because of the DS he won't have to help or won't be able to. We have to reassure her sometimes that he will do what she does around the house when he is mentally ready! I think I have made more of an effort to teach my daughter the importance of a clean house since August when I started staying home. I am not the best picker upper my self but I have done alot better since I've been home. She sees that I want it clean and she is understanding better. She does great on doing her room nightly!! My mom never enforced the picking up thing, especially on our rooms. She was a keep your door shut then, kind of gal. I't didn't teach me much. I have read more than one child help book that you should let your children go through that messy "be me" phase and shut the bedroom door. I don't subscribe to` t` (russell decided to help type just then). I don't subscribe to that way of thinking! It didn't work for me or my siblings.
Ok, now that that is all over, I wish everyone a great evening. I will try to keep up and read. Or read and respond. It will be more challenging with the work think invovled. I don't know how you working mom's do it here. I don't know how I will keep up with you all. I will try my best!!!
See you all later!!!!
Adrienne
Hi everyone!!!Lisa H. Thanks so much for recommending the book "Out of sync child." I'm starting to read it and its interesting.
Jackie I love to read your posts.I wish we could've had such excellent pediatricians and ob's when Olivia was born.(but we do now)I think a lot of my fears would have been lessened had the hospital staff not avoided my room like the plague.Once we got Olivia a great pediatrician and changed hospitals everything seemed to turn around.It's amazing what a change to a positive atmosphere can do for your feelings as well.It's catchy,just like the negative can be.I try to avoid the negative at all costs.
We go to our first transition meeting on May 2.The beginning of the process.I will have some questions for all after I'm sure.
RO WHERE ARE YOU??????????????????????????????????????????????????
Well gotta go.Bye
Hello everyone!Shawna - I am amazed that a teacher would speak to you like that. I am a teacher and would be very happy to hear a parent take the stand that you did. We need to set more limits for our kids so they know that they too have responsibilities and can learn to depend on themselves and become self sufficient. You seem like you're doing a great job with you kids and I say keep towing that line!
Allisa- My son started PT when he was just 3 months old and I also thought it seemed a little silly. I am glad he did start that early because now at 6 months when he's starting to do more things the therapist really knows where he's coming from because she's been with him the whole way. I think it's great that your daughter is already getting her thumb in her mouth and has good head control. You're right in saying that the little things matter so much. I didn't think about these small milestones with my other three boys but with Patrick they are something to celebrate!
Sherri - Way to go Jared! I'm so sorry about your father and know you must be going through a really tough time now. Please know that we wil keep you in our prayers!
Radonna - Boy will you have a lot of reading to catch up on! We'll miss your posts!
Everyone - April is winding down and we still need your votes for the cutest baby contest. Just think - in 4 more days you wont have to listen to me go on about this anymore!(Unless I enter one of my other boys - just kidding!) Plese go vote for Patrick if you get the chance. I posted the address above. Thanks to everyone who takes the time to vote!:)
Mary L.
I just wanted to say Goodbye, andI will miss you guysI wont be near a computer until Sunday sometime. I don't have time to say all I would like, but I will when I get backBYE PEOPLES I can't get over how bad I am going to miss UNO MAS,
Radonna
What a great weekend we have had in our household!! I just had to share with you guys!! First of all, Jared finally took his blanket sleeper (pj's) off all by himself. I was doing dishes & I heard him come into the kitchen, he came over & tapped me on the back of the leg........when I turned around, there stood my naked baby!! (At least he hasn't tried pulling his diaper off yet.)I asked him where his pj's were & he went & got them for me. I am sooooooo proud of him!!! Then when we had our SP visit, Jared starting verbally saying "ball mom". He has also been putting 3 words together with signing, for example if I get him something & hand it to him, he signs "thank you" & says "mom". Our SP pointed out that she was seeing & hearing alot more 2-3 words combinations with signing & verbal words. (Note that the SP hasn't been to our house in about 4 weeks due to some scheduling conflicts.) See what she is missing out on!!!!
Jackie: I love reading all the stories about Emily!! Thank you so much for sharing them with us!! Really makes my day!
Shawna: I don't know how strict you are in your household, but if you don't teach your child some manners & rules at home, then who will???? Here are some extra ((HUGS)) from me & Jared!! Hope tomorrow is a much better day for you guys!!
Trene: I will be saying some extra prayers for Kellan!! Please keep us posted on how things are going. Extra ((HUGS)) for you guys too!!
Allisa: I forgot to ask you the other day when is Erin's heart surgery? Extra ((HUGS)) & prayers for you guys too!!
Susan: Thank you for asking about how my parents are doing. My mom just went back to work on Monday (24th) after being off two weeks due to having surgery. Doctor thinks something else might be going on now, so he is sending her to a specialists (Gastrointestinal), but she can't get in for a whole month. My dad has been really sick, in the past two weeks he has had his meds changed 3 times & had several different shots trying to clear up some sort of infection. It is trying to settle in his lungs & keeps coughing up yucky stuff. What scares me the most is that the cancer is very rarely what a person dies from, it's the secondary infections that their immune system can't fight off. (He also got his bone marrow tests back & they are going to just keep him on the meds he is taking for now, an experimental med. He hasn't had any chemo in a year (it quit working), so he has decided to try for quality of life, not quantity. I respect whatever decision my dad decides to go with & just try to live life to its fullest each & every day!!!! I have had to learn the hard way not to sweat the small stuff!!!! Sorry I'm getting teary eyed as I am typing this.
Hope everyone has a wonderful week!!
Hugs!!! Oh what the heck EXTRA ((HUGS)) for everyone!!!
Sherri
Good Afternoon LadiesWe had Erin's first visit from the physical therapist today. I though it was a little silly to be honest with you !! She is only 2 months old !! But it was very nice to have some one here and confirming to me what we have suspected all along..... Erin is beautiful !!! hahaha
She seemed very pleased with Erin's tone and her ability to get her thumb right up to her mouth for sucking and her great head control. Oh it is funny how such seemingly small feats will make you happy.
Shawna, coming from parents who DID bail me & my brothers out of everything, I say you are completeley correct in your manner!! My parents are wonderful and I love them more than anything. I know I can always count on them to be there for me and that is wonderful, but at the same time, they never really taught me to count on MYSELF. I take the approach with my kids that is similar to yours. They will certainly NOT starve to death for one day and the lesson will stay with them forever.
I think you should be more than a little upset with the teacher for undermining your authority right in front of your daughter. Teachers do need to "look out " for the kids, but at the same time, they should understand that you are trying to teach your daughter about responsibility, you were not neglecting her.
Have a great day all.
Allisa
Shawna - reading your venting story reminded me of a story my mom has told me many times: when my older sister, April, was in elementary school, she forgot to take her lunch with her one day. My mom got a call from April's teacher (maybe even principal?) telling her to bring April her lunch. My mom said that she wasn't going to because April forgot it, and she knows that April will never forget her lunch again because she had to go hungry today. The teacher lit into her. She said that my mom was the worst mother and how dare she treat her child that way, etc. etc. etc. But my mom stood her ground, and April never forgot her lunch again! April knew she had forgotten the lunch and knew that mom wouldn't bring it to her, but her teacher wanted to "make" mom bring the lunch. My parents are very strict and I'm so glad they are. They have taught us wonderful lessons and if it weren't for their strictness, we would have missed out on learning the important life lessons. When we grow up to be adults, we need to know that mom isn't always going to be there to bail us out, we need to pay the consequences for our mistakes!! I think you did the right thing, I wish more parents taught their children these very important lessons so that we'd have ALOT more mature adults. !!
Shawna--I agree with you thatkids need to be responsible to get some things done around the house. I have a 7 and 5 year olds that help put laundry away pick up help do many different chores around the house. I think that if we don't set limits then we would have kids eating breakfast when they should be leaving the house. My daughter is so SLOW and we give her time limits on breakfast also or she'd still be sitting there when we are ready to drive to school!! Does your daughters teacher have any children of his own? Maybe he doesn't realize what a chore it can be just to leave th house in the morning. Just a thought-hang in there you know what's best for youf family and what works for you!!!
We took Kellan to Omaha and they changed his formula to Neocate--needless to say it costs a small fortune that insurance won't pay because it is a nutritional supplement. If he doesn't gain weight in a month then they will admit him in Childrens for a "study" whatever that is. I took him to his Ped. yesterday and he weighs exactly the same as a week ago. So far the expensive stuff is no better.Hope everyone has a great day--if anyone else is on this formula let me know if it did or didn't work for you--Thanks!!
Good morning, ladies!!I guess this is my morning to vent!!
I had to go to the school this morning(my oldest had left the Computer Lab key at home - another long story, how that happened LOL), and was told that one of the teachers wanted to talk to me about my 1o yr old, Jennifer. Her teacher proceeded to ream me out that she didn't have breakfast, and had no lunch with her. In our house, breakfast prep time ends at 7:30, and lunches are to be made the night before. I don't always adhere to these, especially making the lunches. Anyhow, today, Jennifer didn't get to the kitchen until 7:45, so she missed breakfast. She didn't make lunch last night, or even in the morning. At the school, she came out and "reminded" me that she had no time last night because she had homework (which she didn't finish BTW), and she had to "watch Michael". The teacher proceeded to tell me, after Jen went back to class, that he thought we had too many rules and things for the kids to do, and as far as he is concerned, it's the parent's job to make sure the kids get something to eat. My temper started to simmer, and I told him Jen was "snowing him", she DID have time to make lunch, and didn't bother getting upstairs in time for brekky. I admit I was getting pretty emotional by then. This teacher seems to have the attitude that our kids are hard done by, as this is not the first incident where he has voiced that, or shown a somewhat belligerant attitude toward our strictness. We are VERY strict - everyone, even our pastor has commented on that. Anyway, I'd appreciate your input and opinion, whether you agree with me or not.
Jackie, thanks for the "Emily stories" - that one about cleaning the bathroom was sooo funny, I could just picture it!!
Ro, I have found Unomas takes a looooooooooooong time to load, but it seems okay; of course, all I've accessed lately has been the message board.
Have a great day. I will try and send my "real" posting later.
Ciao for now.
Shawna
HiSince everyone is having birth experience flashbacks, I'll share mine. As most of you know our grand adventure began 20 years ago from next Wednesday!
It really did begin there because I had no idea that Emily would have DS. I was 33 and had had 3 totally uneventful deliveries. However, I did have 2 miscarriages before I conceived Emily.
All my pregnancies went 2 to 3 weeks over the expeceted due date so when Emily was born right on her due date I was surprised. She weighed in at 8lb 5oz and was awfully red (she had a blood incompatability problem and later had to have some plasma to thin it out). It was on Kentucky Derby Day and in the recovery room we watched the race while I tried to nurse Em for the first time. It was the first time a Filly had won and the writing was already on the wall because the horses name was Genuine Risk. We did not know Emily had DS at birth. She was missing some of the more common DS traits such as the crease in the palm, low set ears, etc.
She was born at 2 in the afternoon and her pediatrician, my OB and my husband were all doing their fellowships (area of specialization that follows internship and residencies) in their respective area of medicine. This was at Fitzsimmons Medical Army Medical Center in Denver.
We had all 3 of the older kids Katie 10, Marnie 8, and David 6 come up right away. Emily was in my room so they held her and voted on her name.....choices were Emily Abby Sarah....Emily Sarah won! I thought she was a bit quiet and pretty puffy, but otherwise no different. Since this was my last baby I decided I would try breastfeeding. We have very good med school friends who live in Denver and when Connie heard I was going to nurse she was there within an hour.......now to say Connie is the EARTH MAMA of breast feeding would not even be enough. She nursed one of hers until age 5! Emily just didn't latch on and nurse at all and I was about ready to kill Connie and everyone else by the end of the day. Also understand that this was a military hospital and no frills. I had to walk from the recovery room to my wing and no one made the bed so I sat up an hour after delivery until everyone finally left about 10 PM in a chair. Needless to say I was a little frayed when the docs came in the next morning with serious expressions and asked when Ed would be coming up.
The hour it took to summon him was the longest of my life because I knew something must be wrong.
However, the manner in which we were told still wins over anyone elses story I have heard and both Ed and I have addressed Grand Rounds about it. Both the OB and pediatrician were present and they made sure Ed had a chair and that I was holding Emily. I still remember their first sentence..."Are either of you familiar with Down Syndrome?".........bottom fell out of my world and I don't remember much about the next few minutes. When I tuned back in they were telling us everything Emily WOULD be able to do. Not one word about limitations! We got info on infant programs, heard about a young lady who played beautiful piano, and it was all very unforced and sincere. I truly think that hour with these 2 sensitive and positive men has made ALL THE DIFFERENCE. Lennie Weisman was the neonatologist/pediatrican and he followed Em for the 2 years we had left in the military. We lost track of him when we moved to Texas and had always wanted to thank him for everything. A yr or so ago we were in DC for Christmas and my daughter came running into the room and said "Lennie Weisman......I've found him....on CNN" Seems he was the head doc for the birth of the octuplets in Houston!
Emily had to spend 2 weeks in the hospital...colostomy for Hirschprungs and 2 heart problems. I tried to stay for almost a week...tied to a breastpump (and trying to avoid Connie and her LaLeche books, vacuum jars, pea pods, cranberries and what nots.) The entire staff was so supportive. After her surgery I had to double scrub everytime I went into see her, wear 2 gowns and a scrub cap. It was like trying to nurse the bionic baby. They did let the other kids in from time to time and even showed them how to change her colostomy bag (all 3 could do it like pros before we came home).
It took me about 6 months to get over that lead in my tummy feeling when I thought about her birth. Like so many others I had to get used to loving a child I didn't know. I spent an entire pregnancy planning to give birth to the perfect Gerber's baby....not one with DS. Happy to say it didn't take long.
Two weeks later we took her home and within that first week she had been Show and Tell three times at Walnut Hills Elementary School.
I have always been comfortable discussing DS with anyone who will listen. I think that because if someone appears curious I usually manage somehow to bring up the DS it has prevented hurtful comments which I think often originate from ignorance of the condition not from a desire from people to be rude or cruel. I often trip all over my tongue trying to say just the right thing when I am around a disability I'm not familiar with and I appreciate when the individual or their family steps in and helps me out.
I think our intro into the wonderful world of DS was somewhat unusual but I think that we should be the rule rather than the exception. Educating physicians and other professionals is something we should all try to do when we can, don't you think?
Daily lecture for the day is over......Emily just called from New Mexico. Sam (their independent living instructor) told them during room check last nite that they need to clean their bathroom better (actually said.....yech, this is really gross.....you need to go to Walmart and buy a mop and Pinesol! Emily wanted to know how to buy a mop. Wish I could be a little mouse when the 3 of them start checking out their options at Target or Walmart. Wonder how (or if????) they've been cleaning it up to now LOL Jackie
Mornin'Yes, Lisa Huppe, it was me. Glad to hear everythings up to date in Kansas City (how corny).....I envy you going there. It is one of my favorite cities. My family started the Jenkins Music Co. there many years ago so my roots go all the way back to the downtown and historic K.C. My daughter Marnie is going to be the cover story for KUMC fall bulletin for her work with the Natl Red Cross in DC. Somehow, with all these ties I thought I would have one child at least settle there so I'd have an excuse to visit. Enjoy your time there and don't work too hard Jackie........and if you meet any OLD OTR's ask them if they went to KU with Jackie (jenkins) Dodson
Hey Everyone! Just wanted to say GOOD MORNING.I leave for Kansas City for another conference this afternoon. Will be back Sat. morning. It'll probably take me all weekend to catch up with all the posts again.
JACKIE: Was it you that asked about how things are in MO and K.C. awhile back? Missouri has a great early intervenion program that provides all sorts of services without regard to income. And Kansas City has a wonderful Down's clinic at Childrens Mercy hospital. They also have one of the best pediatric cardiology departments in the country.
ALICE: I'm with everyone else, you need to tell people about your son's DS. People will amaze you wih how accepting they are. And it will help you to be able to talk about it. You will find that as you tell people, you will begin accepting it yourself. There is no shame in having a child with DS. In fact, in time, as you accept all of it, and he grows and learns, you will probably find that there is great honor in having a child with DS.
We didn't know about Alex's DS until she was 3 weeks old--Just a few days before my brother and sister-in-laws first visit since her birh (they live 8 hrs away). I was still an emotional mess and didn't know how everyone would react. When I told my sister-in-law about the DS, she said "well, we'll just have to love her twice as much" then she picked Alex up and snuggled her and kissed her and and told her how beautiful she was. Now, she can't wait till Alex is old enough to go spend a week with them in the summer.
Well, I better get off here. I've got a ton to do and I still haven't packed yet. Will be thinking of you all. Be sure and save your "info goddess" questions till the weekend!!!
Lisa
Hi everyone just doing the daily check-in.I really love reading through all of the posts, as a matter of fact I have noticed that I have given up reading the daily newspaper. I used to read it cover to cover. I think Uno-Mas has taken that space and time from the news !!
Just a last comment to Alice..... maybe you should consider a switch in doctors. I don't really know what they intend with the SORRY face, possibly it is supposed to be a show of concern for your well-being?? All of our doctors were nothing but supportive and wonderful. If it had been presented to us in a different manner, maybe it would not have been such an easy adjustment for us.
Erin needs surgery in a few weeks, so we are seeing doctors at least once a week and they all seem genuinely concerned and loving to her. Doctors see so many patients it is understandable that they can't give everyone their utmost attention, but I feel like they do to her.
Thank God we do not have any experiences or prejudicies like Mary from the UK had. I have been to Spencer's site and reading his story. Unbelievable is all I can say, I am so glad you were able to get together with the doctor (I forget her name now) that for the first time really took care of him.
Well good night to everyone. Erin starts physical therapy tomorrow. I am curious to see what they do for a 2 month old. We are also going to a DS support group meeting being held at Early Intervention Center. I am looking forward to meeting other families in the area.
Allisa mom to Connor (6) Ty (2) & Erin 2 mos. DS)
Hello Everyone, I haven't posted in a while but have a lot to sayMy son Andrew (ds) will be 2 on Thursday 4/27 and we had a big party for him on Saturday. He really enjoyed everyone coming to the house and was an absolute angel throughout the entire party. The previous saturday we were at my nephew's party and he was watching the 4 year old boys playing basketball on one of those little tikes goals and the next thing we knew Andrew picked up a full size basketball and went over to make a basket. They lowered it for him and "yeah" 2 points. I ran to Toys R Us and bought one for his birthday. He just makes baskets one after the other. It is so cute and I am Sooooo proud of him.
He also got a little outfit that has a car on it and he just loves it. Does anyone else have a boy that notices clothes and what's on the front of them. He has a tie die shirt that we bought him in Colorado that he just loves. I think he will be a clothes horse like Adam in "Expecting Adam"
Andrew was scheduled for Surgery today on his belly button repair but has an ear infection so it was a no go.
Alice, I'm with everyone else and encourage you to tell everyone. We were told when Andrew was 1 hour old with most of our family in the room so I didn't have to break the news to my parents but I chose to tell everyone right away and everyone has been very supportive. The hardest was people at work because it just seemed more awkward, they didn't know what to say. I soon found with Andrew's birth more love from him and from my family than ever imaginable. The only person that doesn't know about Andrew's ds is my 95 year old Grandfather because my Mother doesn't think he would understand. I think we are very blessed and that God sent us these wonderful children and we should share them and their love with everyone that we possibly can. I am very proud of my son and I want to show him off to everyone.
At church on Sunday, Andrew's sunday school teacher gave me her neighbors phone number who has a 1 year old daughter with ds. I called her and told her about unomas. Her daughter is doing very well and I hope to get together with them soon.
I'm really scared about all of the runaway stories I am reading. I just know Andrew is going to give me fits because he won't hold my hand.
Susan, my son also Duodenal Atresia, had surgery at 2 days old and came out of the surgery with flying colors.
I can't remember everyone I wanted to respond to but I might post again after I go back and read.
Take care, Andrea
Hello everyone. I'm very excited today. I just found out that I will be watching the daughter of friends of ours, who has Ds and was born just three days before Patrick, while her mom goes back to teaching next year. This means I will earn enough money that I can take at least another year off of teaching. I also think it will be good for Patrick to have Clair around and they can become good buddies. Just had to tell everyone because I was really hoping for a way to be able to stay home with Patrick and this just kind of fell into our lap!Just a reminder that there are only a few days left in April for the baby contest so please
VOTE
VOTE
VOTE
The address is http:/www.all-about-babies.com/aprilcontestentry.html
Remember we are voting for Patrick, Jason, Joe, & Nikki.
thanks again to everyone who voted!
My pen seems to hav