new member

[Guest guest]

Welcome to the group, you'll find so many answers here. My triplets are

now 7 and we also have a son who is 9. I am probably not the best person

to inform you where to start because it seems like a lifetime ago my Zack was

a baby. There are lots of younger families. You need to keep up w/ the cardiologist

of course, do you have good health insurance? We are lucky to be on our Florida

Children's Medical insurance, which has helped w/ eye drs, ear drs, etc. You

can find out who locally to contact for all of Caleb's theraphies (physical,

speech, and occupational) the earlier you begin the qualifications the better. Zack

was recieving all 3 by about 5 months. It's a learning process and you are way

ahead if you found this group already. You need time to get use to your new twins.

Congratulaions! You never told us your name and where you live?

Irene & in Central Fl

Jake 9

Zachary DS, , & 7

new member

hi, i am a new member and am looking for all the helpi can get for my son.in short version, my husband and i tried for years tohave children and finally went to a fertility clinichere in the Twin Cities, i ended up using donor eggsand after years at the fertility clinic found out iwas pregnant with twins...that was the happiest day ofboth out lives.the pregnancy was uneventful until 29 weeks when oneof the boys was found to have a heart problem. aftermany ultra sounds and specialists we were told thatone of our twins was possible DS and with his heartcondition was not going to live past a couple days.to say nothing we were divested. so after weeks ofbeing seen 2x a week at the specialists office, theboys were born at 36 weeks. Caleb my twin with theheart problem was born at 6 pds 6 oz and only spentone night in NICU. his brother was born 6 pds. 12 oz.Caleb has been one of the greatest joys, the doctorssaid his heart is nothing short of a miracle, he willstill need open heart surgery but from what it waslike earlier on he told us we must have someone on ourside.i got the call a week ago that his chromosomes cameback with a diagnosis of DS...other than that i havebeen told nothing. what are my next steps in gettingeverything Caleb needs. any information would help.__________________________________________________

[Guest guest]

Mom to Caleb,

I don't even know your name, but congratulations. I have twin boys, and Beckett, who are 3 1/2 years old. was born with DS and it was a complete shock to my husband and I at the time. I immediately joined this group and a local area one where I live. It has been very beneficial for me. The daily struggle of just raising twins is enough, then add a slight change to that, with a DS diagnosis, and it can be a bit overwhelming.

My son was exactly 6 lbs. 6 oz. also! Although he was 34 weeks and stayed in the NICU for 3 weeks. Sounds like your boys are very healthy. Good luck!

-

-----Original Message-----From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of Chad StanfordSent: Tuesday, September 06, 2005 10:07 AMTo: Multiples-DS Subject: new memberhi, i am a new member and am looking for all the helpi can get for my son.in short version, my husband and i tried for years tohave children and finally went to a fertility clinichere in the Twin Cities, i ended up using donor eggsand after years at the fertility clinic found out iwas pregnant with twins...that was the happiest day ofboth out lives.the pregnancy was uneventful until 29 weeks when oneof the boys was found to have a heart problem. aftermany ultra sounds and specialists we were told thatone of our twins was possible DS and with his heartcondition was not going to live past a couple days.to say nothing we were divested. so after weeks ofbeing seen 2x a week at the specialists office, theboys were born at 36 weeks. Caleb my twin with theheart problem was born at 6 pds 6 oz and only spentone night in NICU. his brother was born 6 pds. 12 oz.Caleb has been one of the greatest joys, the doctorssaid his heart is nothing short of a miracle, he willstill need open heart surgery but from what it waslike earlier on he told us we must have someone on ourside.i got the call a week ago that his chromosomes cameback with a diagnosis of DS...other than that i havebeen told nothing. what are my next steps in gettingeverything Caleb needs. any information would help.__________________________________________________

[Guest guest]

Hi ,

I've been thinking about you; hope all is well. Glad you had a nice vacation.

Sherrill

[Guest guest]

Hi,

You found the right place. Between all of us, I can't imagine there is a

question or situation one of us hasn't experienced.

My name is and I have four kids. Sara and Maggie are our

twins...Maggie has Down syndrome. The girls are 6. Maggie is fully

included in 1 st grade. She is very independent, beginning to read, she

does her math....she is talking. She is more like her sister (and other

kids) than she is different.

Never feel you have a " bad " thought or stupid one. Keep asking questions.

Definitely start therapies ASAP. Maggie started all her therapies by 4

months. Maggie was 2.5 months old before anyone noticed she had Down

syndrome. Be positive...

Quinn-9, Sara and Maggie-6, Teddy-4

new member

hi, i am a new member and am looking for all the help

i can get for my son.

in short version, my husband and i tried for years to

have children and finally went to a fertility clinic

here in the Twin Cities, i ended up using donor eggs

and after years at the fertility clinic found out i

was pregnant with twins...that was the happiest day of

both out lives.

the pregnancy was uneventful until 29 weeks when one

of the boys was found to have a heart problem. after

many ultra sounds and specialists we were told that

one of our twins was possible DS and with his heart

condition was not going to live past a couple days.

to say nothing we were divested. so after weeks of

being seen 2x a week at the specialists office, the

boys were born at 36 weeks. Caleb my twin with the

heart problem was born at 6 pds 6 oz and only spent

one night in NICU. his brother was born 6 pds. 12 oz.

Caleb has been one of the greatest joys, the doctors

said his heart is nothing short of a miracle, he will

still need open heart surgery but from what it was

like earlier on he told us we must have someone on our

side.

i got the call a week ago that his chromosomes came

back with a diagnosis of DS...other than that i have

been told nothing. what are my next steps in getting

everything Caleb needs. any information would help.

__________________________________________________

[Guest guest]

HI there! Welcome to the group. You found the perfect spot to meet

lots of great families that can truly help! Amy husband and I have 4

kids. Amy is 17, Kelsey is 15, Davy and Will are 5. Davey has DS. Our

boys were IVF babies. We found a problem when I was about 6 months

pregnant with Baby A (Davey). After much testing, and several

procedures to remove fluid from his pleural cavity in utero, we found

out he had DS. He is just the greatest kid. We feel so blessed to have

him.

The first thing you want to do is find your early intervention clinic.

Get started with them right away. Where are you located? How old are

your boys?

Congrats on your new family.

and family

new member

hi, i am a new member and am looking for all the help

i can get for my son.

in short version, my husband and i tried for years to

have children and finally went to a fertility clinic

here in the Twin Cities, i ended up using donor eggs

and after years at the fertility clinic found out i

was pregnant with twins...that was the happiest day of

both out lives.

the pregnancy was uneventful until 29 weeks when one

of the boys was found to have a heart problem. after

many ultra sounds and specialists we were told that

one of our twins was possible DS and with his heart

condition was not going to live past a couple days.

to say nothing we were divested. so after weeks of

being seen 2x a week at the specialists office, the

boys were born at 36 weeks. Caleb my twin with the

heart problem was born at 6 pds 6 oz and only spent

one night in NICU. his brother was born 6 pds. 12 oz.

Caleb has been one of the greatest joys, the doctors

said his heart is nothing short of a miracle, he will

still need open heart surgery but from what it was

like earlier on he told us we must have someone on our

side.

i got the call a week ago that his chromosomes came

back with a diagnosis of DS...other than that i have

been told nothing. what are my next steps in getting

everything Caleb needs. any information would help.

__________________________________________________

[Guest guest]

Welcome to you and your family to this group. My name is Mabel Comas, mom to Carolina, Cristian and a, they are 6 years old. a has down syndrome. I was the first person besides the doctors to notice Gaby has down syndrome, I cried of course I was so scared to loose her after expecting my babies for so long, the first months on Gaby's life were kind of scary, we didn't knew how she was going to develop, but I started getting informed, looking for all the help I could to help her and help us. Thank God she is very healthy, smart and very active, just yesterday she started riding the bus, I was so scare she was very happy, she looked sooo cute and sooo small on her seat. When I had my kids I thought I was the first person in this world having triplets and one with down's. I remember posting my story in uno mas ( a down syndrome site) and I received an invitation from one of the mom's in this site, Huckabee. Once I started meeting other moms and reading their stories, advices, concerns I knew I found the place to be able to share and get information from other experienced moms. Been a mom of triplets and one with down syndrome is been an exciting experience. While they grow one of the many things I did and still doing is enjoy them. Time does fly. Now I look back and feel very proud of myself and my kids. Can't believe how much they had grown and what a great kids they are. Caleb is very lucky to have his twin brother who will help him a lot. Have a great day and remember you are more than welcome with any concern and questions if one of the mom's can't answer you, for sure another mom will be able to help you. You are not alone, we are here for you.

Mabel, mom to Carolina,Cristian and a-ds 6 years old here in land

Reply-To: Multiples-DS To: Multiples-DS Subject: new memberDate: Tue, 6 Sep 2005 10:07:12 -0700 (PDT)hi, i am a new member and am looking for all the helpi can get for my son.in short version, my husband and i tried for years tohave children and finally went to a fertility clinichere in the Twin Cities, i ended up using donor eggsand after years at the fertility clinic found out iwas pregnant with twins...that was the happiest day ofboth out lives.the pregnancy was uneventful until 29 weeks when oneof the boys was found to have a heart problem. aftermany ultra sounds and specialists we were told thatone of our twins was possible DS and with his heartcondition was not going to live past a couple days.to say nothing we were divested. so after weeks ofbeing seen 2x a week at the specialists office, theboys were born at 36 weeks. Caleb my twin with theheart problem was born at 6 pds 6 oz and only spentone night in NICU. his brother was born 6 pds. 12 oz.Caleb has been one of the greatest joys, the doctorssaid his heart is nothing short of a miracle, he willstill need open heart surgery but from what it waslike earlier on he told us we must have someone on ourside.i got the call a week ago that his chromosomes cameback with a diagnosis of DS...other than that i havebeen told nothing. what are my next steps in gettingeverything Caleb needs. any information would help.__________________________________________________

[Guest guest]

Welcome to the group and congratulations on the birth of your boys!

My name is , and I am mom to Luke & Jake, who are 3 1/2.

Luke has DS and also had to have corrective heart surgery at 5

months. Once we were through that, we felt like we had a " rebirth "

of sorts and could focus on life ahead. We also got involved in

Early Intervention when Luke was 6 weeks old, and his therapists were

invaluable to us. Your pediatrician should be able to help get you a

referral. The term " Down syndrome " was scary and unfamiliar to us at

first, but we've learned so much in a short time, and finding a local

DS support group and of course this list-serve have been so important

to me. Knowing there are others in the same situation, who can offer

advice and words of wisdom, have kept me going when I get down. But

both my boys are so wonderful and have brought our home lots of fun!

Caleb will be such a blessing to your lives. I look forward to

hearing more from you.

> hi, i am a new member and am looking for all the help

> i can get for my son.

>

> in short version, my husband and i tried for years to

> have children and finally went to a fertility clinic

> here in the Twin Cities, i ended up using donor eggs

> and after years at the fertility clinic found out i

> was pregnant with twins...that was the happiest day of

> both out lives.

>

> the pregnancy was uneventful until 29 weeks when one

> of the boys was found to have a heart problem. after

> many ultra sounds and specialists we were told that

> one of our twins was possible DS and with his heart

> condition was not going to live past a couple days.

>

> to say nothing we were divested. so after weeks of

> being seen 2x a week at the specialists office, the

> boys were born at 36 weeks. Caleb my twin with the

> heart problem was born at 6 pds 6 oz and only spent

> one night in NICU. his brother was born 6 pds. 12 oz.

>

> Caleb has been one of the greatest joys, the doctors

> said his heart is nothing short of a miracle, he will

> still need open heart surgery but from what it was

> like earlier on he told us we must have someone on our

> side.

>

> i got the call a week ago that his chromosomes came

> back with a diagnosis of DS...other than that i have

> been told nothing. what are my next steps in getting

> everything Caleb needs. any information would help.

>

> __________________________________________________

>

[Guest guest]

Hi and welcome. My name is Amy and I have a 3.5 year old boy and

Twin girls who are 1 year old. Both of the girls have Ds. It too was

a surprise and they were also preemies. I joined my local Ds group

right away (whenever you are ready is the " right " time). I also

started the physiotherapist/occupational therapist assessments early

(3 months). Continue with you cardio. and try to find a good

pedeatrician. Books are good and I also saw the video by the NDSS.

Another good video is Down Syndrome: the first 18 months

or something along those lines. You have found a great group.

Everyone else is sooo right. Try to get as much rest as possible and

don't forget about taking care of yourself! The first few months for

me was such a blurr, but somehow I managed and so will you.

Congratulations on your babies. Take care.

Amy, mom to Blake 3.5, Carly and Calli 1 yr. both w/Ds

> hi, i am a new member and am looking for all the help

> i can get for my son.

>

> in short version, my husband and i tried for years to

> have children and finally went to a fertility clinic

> here in the Twin Cities, i ended up using donor eggs

> and after years at the fertility clinic found out i

> was pregnant with twins...that was the happiest day of

> both out lives.

>

> the pregnancy was uneventful until 29 weeks when one

> of the boys was found to have a heart problem. after

> many ultra sounds and specialists we were told that

> one of our twins was possible DS and with his heart

> condition was not going to live past a couple days.

>

> to say nothing we were divested. so after weeks of

> being seen 2x a week at the specialists office, the

> boys were born at 36 weeks. Caleb my twin with the

> heart problem was born at 6 pds 6 oz and only spent

> one night in NICU. his brother was born 6 pds. 12 oz.

>

> Caleb has been one of the greatest joys, the doctors

> said his heart is nothing short of a miracle, he will

> still need open heart surgery but from what it was

> like earlier on he told us we must have someone on our

> side.

>

> i got the call a week ago that his chromosomes came

> back with a diagnosis of DS...other than that i have

> been told nothing. what are my next steps in getting

> everything Caleb needs. any information would help.

>

> __________________________________________________

>

[Guest guest]

Hi Sherrill,

SO busy with school starting. I

thought I would have more time…no.

Okay, so…we should plan a

meeting!

STacy

From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of SETREB@...

Sent: Tuesday, September 06, 2005

10:24 PM

To: Multiples-DS

Subject: Re: new

member

Hi ,

I've been thinking about you; hope all is

well. Glad you had a nice vacation.

Sherrill

[Guest guest]

Hi ,

I'm going to send you some dates that work for us if you and your family would like to come to West Roxbury for a visit. It's a part of Boston near Norwood, Needham, Newton if you're familiar with the area. We are open for Saturday and Sunday October 15th and 16th, Saturday and Sunday October 22nd and 23rd, and Saturday and Sunday October 29th and 30th. Let me know if any of those dates are good for you. Or if you want to meet somewhere in between the two of us that works too.

I hope all is well and imagine it's taken us 3 years to get to this point!!

Sherrill

[Guest guest]

I have the list of the meds he is on a the RTC and they are NOT

allowed to change anything until our Dr's here approve it. My team

of Dr's now (b.c of al the challenges we have faced) are awesome adn

they are very well--least med approach. They are through Washington

University here in St. Lousi and are doing some pretty good ASD

Research which when gets home will be part of since he is A-

Typical Aspie.

The gf diet is on my list. I am hopefully goign out with my g/f who

has chrones and can help me find all the hidden away cheap places so

we can at least try it.

is alergic to Lithium which I notice some of these

enzymes/suplements have complex molecules simlar to these in them.

I am in the proess of ahving my pharmisist (local mom and pop place--

not a walgreens) run a list for possible interations and making

sure there are not lithium products produced also at there

facilities. (amazing how much stuff is cross contaminated)

I may look to eastern meds when he gets out. Unfortunately we have

spent ever last dime we have on him and now my other step son is

showing weird behaviors--think he is attachment disorder issed and

anxiety issues, so now I have to figure soemthing out. DAN dr's

here are not covered nby my insurnace and I don;t have any family

suppport on even getting the 3-500 to go to the DAN Dr. So I may

just look at an alergist to work with food sensitivity and have his

gi loked at by a gastro (he does have stomache issues).

Right now we just have to sit and wait and see if this works out of

his system and when it works out of his system. I just hate that it

is somethng i have NO CONTROL over!! I just want him to be back to

normal. I never ever thought I would say I would rather have him

have a meltdown--UGH

Thanks for the info,

Grace

> >

> > First of All I am truly amazed at the amount of information out

> > there on this site and the amount that is hidden from

the " adverage

> > consumer. "

> >

> > I was referred to this site by Kathy after finding out that

there

> is

> > a vacine injury report that needs to be filed out for any

reaction

> > to a vacine. Amazing how Dr's don't tell you that.

> >

> > Anyway here is my short story of how I got here and how it has

> > effected me.

> >

> > I have a beautiful intelligent 14yo step son who is

effected

> > with ADHD/PTSD and Asperger Syndrom. I truly believe alot of

his

> > isues while there is nature involved have been increaed simply

due

> > to a seriously abusive bio-mom. We got custody of him on

January

> > 2007 and once we got him out of junk food and hot dogs and beans

> > heaven and got him eating healthier we saw an improvement.

> >

>