Re: Introduce Myself

[Guest guest]

Welcome . Listening is what we do best. Congratulations on your growing

family. Our daughter, Maggie (MDS) is now 4 years old and just doing amazing

well. Look forward to getting to now you.

Carla Duffy

>

>Reply-To: MosaicDSegroups

>To: <MosaicDSegroups>

>CC: <confirm-do-63738-rosepetal=one.net.auegroups>

>Subject: Introduce myself

>Date: Sat, 9 Sep 2000 22:35:28 +1000

>

>Hi my name is Sussan and I am a proud mother of a baby girl born

>12-5-00.Weight was 5p-2ounces name Courteney Rose. Specialist thought she

>was smaller than my other children and wanted to check blood. Test

>results came back and showed 9 cells out of 50 have D.S... Courteney is

>my 4th child and there was no difference to the others.. I am just happy

>that I have my girl as the other 3 are boys. To me she is my special

>ANGEL and I love her just the same.....

>

>

> Thanks For Listening

> SUSSAN

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[Guest guest]

Welcome , Congratulations for Courteney Rose, precious name for a

precious girl, this is the best supportive group you've ever seen.

(Father of Alan 5 mds and 1 yr and 7 mo., married to )

[Guest guest]

Hi and welcome to the group!!

Also congrartulations on having a baby!! My daughter Mahrya was diagonsed

with MDS when she was just a few weeks old. Her blood test showed 33% of the

cells having the extra chromosome. She is 4 and a half now and I can not

imagine life without her. She does not have many features of ds, and

physically progressed quite normally, crawling at 8 months and walking by 13

month. She does have some cognitive delays, but is continuing to progress

very nicely. She talks with us and will say waaasssuuupp (like the

commercial) to her siblings. As far as how her own siblings react to

her...I think they sometimes forget she has ds. She is thier sister, she

loves them and they love her. She is treated the same as any other child in

the family, and fits in quite nicely. We were very fortunate to have both a

wonderful supportive Dr. and genetic counselor who got us off to great

starts. You will not regret letting this little one come into your lives,

just like any child he will give you heart ache and joy, but mostly joy.

Again congratulations on your baby!!

>Hi everyone, my husband and I would like to intorduce ourselves.

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[Guest guest]

She talks with us and will say waaasssuuupp

How funny. Ben has older siblings and they taught him to say it too. One day I was holding him and a mom holding her six month old baby and he leaned over, looked at her and said, "waaasssuppp!"

Carol mom to Ben 2mds and 4 sibs.

[Guest guest]

Dear Ellen & , Welcome to the greatest resource of support and information we know of for people whose lives have been touched by MDS! We are so happy that you have decided to allow your lives to be blessed by this miraculous son you are waiting to meet! You won't regret the decision ever. We are sorrowful that a doctor would be so bleak about a child with MDS. If only that doctor loved a child or had ever been loved by a child with MDS, you would have been given much more hope!Please have great expectations for your son. These children thrive on the expectations of their parents and caregivers. Your other children will love this little boy, and perhaps be great teachers and advocates for him. In all your decision making to come, your child will be your greatest guide. Lots of prayers go out to your family, and we will be awaiting all your news along the way! Bob & Barb Martz Parents of Jonas 4 1/2 months (MDS) & 5 1/2 y.o. Introduce Myself Hi everyone, my husband and I would like to intorduce ourselves. This may be repetative and if so, please forgive us- we posted our introduce ourselves on the message board- but we don't think it was suppose to go there- anyway- Our story begins a week ago when we arrived for our 5month check. I could tell right away we were instore for bad news-from the way the receptionist greeted us- to the manner in which we were taken so quickly and wisked into the Dr's actual office. Our amnio results were in- and the Dr. was quite blunt on delivery. Before he was fully in his seat he was telling us our son had Downs- all I heard were bits and pieces from there- alot about termination - 99% of couples terminate- ...so hard on the family...very difficult life...I don't think I lifted by head once. I probably took the news harder since this was our third pregnancy in a 1 1/2 time frame. We had two miscarraiges -both at twelve weeks. Now here we were at 5 months- all supposedly looked great- The 12 week test showed negative for Downs, the Level2 Ultrasound was perfect- but the amnio told us differently. Having 3 children already at home- 2 girls 10 & 4, and a boy age 11- we felt termination was probably best. I had grown up in a household with a mentally handicapped stepbrother and it was very tough on me. I didnt want my children to go through what I did. We left the office with termination scheduled for the later part of the week. That night I was reminded of a dream I had just a few nights ago- there was a baby that looked downs- we were told it was ours but we were told to review the results- smehting was wrong with the results of the amnio- Well- with that in mind, we went to the Dr's the next morning and asked to see the amnio results. It was only at this time did the Dr advise us that he had Mosaic Downs- the report read 70% cells normal, 30% Trisomy 21. This could result in normal to nearly normal to severe Downs. While our son still is diagnosed with DS we felt very cheated in not knowing this information upfront. We told him to cancel the termination until we got more information on Mosaic DS. He stressed that most likely the results will be moderate to severe. We thankfully found the Mosaic Down Syndrome Website and we so taken back to read all the wonderful stories we read. To think any one of these children could have not been born- it was horrid to think that our Dr could be so wrong about DS! We met with a genetic counselor who was also pretty negative- expect the worse- to better than full blown Downs... It was this Website and the blessed parents and caretakers of these wonderful children that helped us make our decision to continue the pregnancy - and we cant thank you enough for saving our sons life. We've since seen a Fetal Cardiologist who did an Echo on Baby and he said his heart looks great. We also had a second Level2 Ultrasound and were told there are no DS markers - his femur bone actually measures bigger than it should, his head is round, he has a defined chin, no extra skin in the back neck area, his brain looks well formed, he's opening and closing his hands- all toes and fingers accounted for and no club feet- he is very active and ive felt him kicking since 3 1/2 months and all other organs look fine. So far so good and we celebrate! We are scared- scared of the unkown- where are the majority of the DS cells? Will he appear DS? Will he have significant mental retardation? No one can answer these questions and we await his arrival for the answer to some - others will have to wait until he gets older. Fear of the unkown most definetly can overtake me at times- but when it hits I try to focus on the many wonderful stories you all of shared online. We haven't shared the news with many yet- our biggest concern is to label him. Since there are mosaics that go undiagnosed we are afraid to put limitations on him. He may look very normal but have slow progress in certain areas- we wouldn't want people to expect less of him because of the DS label. Our biggest concern is how our children will accept him- we don't want to scare them now and we think we are going to wait until he is born to see how affected he is before we approach the subject. We plan on getting him therapy right from the start regardless of what he looks like, or appears to do on time. One thing we've learned from online is how important early intervention is. God bless all of you in sharing your stories and forming this support group. We'll keep you posted on our progress. Baby is due in July. We'd love to hear from any and all of you ! Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Hi! I'm Angel, mom to 4 children, Tyler is 9, is 8 and has MDS, is 6 and Jaeda is 4. My MDS son wasn't diagnosed until he was 16 months old, prior to that he had had 3 operations shortly after birth due to bowel problems (Hirschsprung's Disease), but no one noticed his downs. Ironically, my husband and i had made a few "jokes" over his first year about him having down syndrome. I wanted to respond to your letter though because it reminded me of something we went thru, which i'm not sure if it's posted on the website or not, since I haven't checked out the site in some time, oops... I had found out about 's downs when I was already several months pregnant with my next child, , so the dr's said I qualify for amniocentisis, which i chose to have, and that pregnancy result came back as normal. When I was pregnant for the 4th time, I dedided to have an amnio again, didn't want to be surprised... The results came back that it was a girl (finally a girl!), but that there was a serious problem, that she had a mosaic chromosome deletion which was VERY rare, and the only few cases they could find of it in the medical records, the children all had a failure to thrive, and died by their first birthday, they were severely retarded, had multiple physical deformities, etc. Of course they thought i'd terminate, but I said no, so as the pregnancy progressed, I got all the Level 2 ultra sounds, etc also, but they couldn't find any physical abnormalities, she seemed fine physically.

When she was born, I had predetermined that i wanted her blood drawn from the umbilical cord to be tested, rather than the amniotic fluid... the results were, that she was perfectly normal. Talk about a stressful pregnancy... and she was fine the whole time! I suppose I'm just a little leary of amnio's now, especially when they come back with mosaic results.

And if your amnio is correct, *I* think that 30% affected is something to be very optimistic about! My is 50%... I try not to compare, sigh.. but i do... It seems to me that in 's case, he does not look very down, strangers don't see it, but mentally it's very apparent, he's kind of 'plateaued' developmentally right now, but theres mosaic children who look very downs, and are very high functioning, and all the possibilities in between, and you really just can't guess what might be in store for your precious lil' , other than he's got a mom and dad who sound like they really love him, and want the best for him!

I think i've taken up enough space... heehee

Prayers and Blessings,

Angel

[Guest guest]

Hi Ellen & ,

So happy to hear you are keeping your baby. I have 3 children, a son 13, daughters 12 and 6. My 6 year old is MDS. I also had an amnio which came back negative. It wasn't until she was a month old that I noticed she seemed different then my other children and had her tested. The results were 70% normal 30% affected. She is a special child very stubborn, loving and independent. She is now included in a regular first grade class and doing ok. She has some speech problems and has trouble with math but she is learning to read. I have been a single mother now for 7 years and she has brought much joy to my life. She is difficult at times and it is always a challenge with her but I wouldn't trade my life with her for anything.

Please keep us posted on how you are doing.

Take care,

Jeanne

[Guest guest]

" Our amnio results were in- and the Dr. was quite blunt on delivery. Before he was fully in his seat he was telling us our son had Downs- all I heard were bits and pieces from there- "

I have been lurking on the fringes of the postings for months, and was preparing some e-mails for Thereputic Horseback Riding tonite and saw your posting

-After a flashback and after a few tears, I am replying with a smile and best wishes for you-You have taken me back to almost two years to the day, and faced with an almost identical situation-except we were expecting our first child. She is now 18months old, and exceptional at everything, especially at charming everyone she comes in contact with! the only problem she's had so far is some gross motor delays-shes almost walking independantly, and needs a splint on her left foot, but, hey, I needed corrective shoes for flat feet, too! And, boy, is she ever tall, like the 120th percentile or something, and weighs 30 lbs. Dont ever give up hope-I was told to expect the worst, and when she was born the attending OBGYN and nursing staff kept looking at her chart to confirm the Trisomy (are you sure, Mrs. Fullarton?) You can get all your services(Early Intervention, Rehab team services, etc.) lined up and researched before he arrives, and your initial grieving and anger dealt with before he arrives (yes, you will shed a lot of tears). I wish I hadn't been given so much negativity before baby arrived - she has been such a magnificent gift to our lives, I couldnt have imagined what I would have missed with a 'normal " child. You appreciate EVERYTHING this child can and will do !

" Welcome to Holland " , and we hope you enjoy your journey as much as we have !

(36) Larry (40) and (1-1/2)

Harvey Station, NB Canada