hello

[Guest guest]

Hello B. I also take verapamil for my headaches....It has tamed them a

bit....still get the headaches more than I like.....take care! Love, Barb

Re: hello

I've been taking verapamil (a blood pressure med) for my headaches

for just over a week and it seems to be making a difference. Of

course, I have been going to the chiropractor quite a bit, so I'm not

sure which is doing more good.

-b

> I have just begun the med journey with my headaches. They are

trying migraine meds...why I don't know because technically they are

not migraines. I've tried Zomig and Maxalt, neither one helped. I

have an anti nausea med (phrengran) that I take when my headaches are

accompanied by nausea/vomiting...and they often are. That knocks me

out and allows me to sleep, therefore the headaches get better. I do

not want a narcotic unless absolutely necessary because I'm a

recovering addict.

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" Hold on to what is good, even if it's a handful of earth. Hold on to what

you believe, even if it's a tree that stands by itself. Hold on to what you

must do even, if it's a long way from here. Hold on to your life, even if

it's easier to let go. " - Pueblo Prayer

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Helen just a thought, we had an incident several years back, and no camcorder. We used a regular camera to take pictures of everything, well you may think' how can that prove anything? We did, the solution is to leave a little plaque with the date and place nearby when taking photos, so it is visible in the shots, it worked, we got a settlement of 33k and not an expensive camera either, to loan a camcorder alone is something like 55 bucks a day Anne

[Guest guest]

Thanks Anne,

That sounds good, and with a recorder going getting all the screaming of them not wanting to stay there just might work. They are suffering bad from all this ( We are going back to court next Fri., as the advicate lawyer said this is not working them seeing us only every two weeks. They are suffering something terrible ( All they do is cry to come home and they aren't sleeping. Their father isn't bugging an inch and won't let us see them during the weeks extra or talk to them on the phone, so she has ordered it back to court. She isn't ready for it to go to trial yet. She said that could be another three weeks. ( How are you doing???

{{{ Special Hugs }}}

Helen

Helen just a thought, we had an incident several years back, and no camcorder.  We used a regular camera to take pictures of everything, well you may think' how can that prove anything?  We did, the solution is to leave a little plaque with the date and place nearby when taking photos, so it is visible in the shots, it worked, we got a settlement of 33k and not an expensive camera either, to loan a camcorder alone is something like 55 bucks a day Anne

Ö

[Guest guest]

OOh Helen it sounds awful for those poor kids, Dad is an awful person by the sound, these things take time though, have a friend who had a similar problem, it took nearly a year but the kids finally came home to their Mom who had taken care of them for life.

I am doing pretty good, got a very nervous stomach and not able to eat anything much for a week now, nerves I expect. The depression came back somewhat and I really had a bad couple of days, okay now I think, it will come and go How are you, poor gal you are going through hell right now Anne

[Guest guest]

Hi Anne, Sorry you have been feeling ill. Yes everything going on is affecting everybody in one way or another (

I hope and Pray by this time next month this nightmare with the girls will be over with!!! I have no idea what posed him to just up and take them, when in June he told me he would Never take the girls out of the only home they have ever known, He Loved them too much!!! So much for him telling the truth!

Hope you feel better soon.

{{{ Healthy Hugs }}}

Helen

OOh Helen it sounds awful for those poor kids, Dad is an awful person by the sound,  these things take time though, have a friend who had a similar problem, it took nearly a year but the kids finally came home to their Mom who had taken care of them for life.    I am doing pretty good, got a very nervous stomach and not able to eat anything much for a week now, nerves I expect.  The depression came back somewhat and I really had a bad couple of days, okay now I think, it will come and go  How are you, poor gal you are going through hell right now  Anne

BLESS OUR COUNTRY !!!

AND

ALL WHO SERVE !!!

[Guest guest]

Dear

If your son Noah has had all of his colon removed how is it that he

doesn't have chronic diarrhea and constant diaper changes? has

had 3/4 of hi colon removed and he must be changed 15 times of more a

day as he has chronic diarrhea. He also has severe diaper rash with

bleeding which looks like 3rd degree burns. I must constantly apply tons

of Desitin to his bum and give him immodium to control his diarrhea. I

really don't know if he will ever be toilet trained as he goes when he

sneezes which indicates he does not have much control. It's very sad for

him as he suffers from pain and as he gets older it may be hard for him

to deal with and accept. He is a bright little guy so if he can

physically do it he can be toilet trained. But I don't know. All the

best

mom to and Matt (6 and 5 years) both with DS and Autism

Harper wrote:

>

>

> Welcome

> my little lad Noah just turned 2 also has DS and Hirschsprungs (and

> infantile spasms but that's another story)

> he had all his colon removed and a pull-thru op at 8 weeks old so luckily we

> didn't have to cope with a colostomy for long

> we get about 4 dirty nappies a day now (although he managed NINE on a recent

> flight from singapore to UK!) and occasional severe nappy rash but otherwise

> he's fine

> I try not to look too far ahead but vaguely wonder, especially hearing

> problems other mums have had, whether we have any chance of ever toilet

> training him. Have you managed/tried with ?

> My other child with DS, Lily age 13 has no health problems and its a joy to

> see her relationship with Noah and watch her patiently try to teach him

> things

> ( mum of 7, New Zealand)

> http://homepages.ihug.co.nz/~harper

>

> http://DSyndrome.com/Multiples

>

>

[Guest guest]

,

I forget just how close our kids are in age. and will be 2 on Nov. 2, so they are almost 23 months. How are all of your kids doing? I miss hearing from you! Wasn't it who was SO sick with RSV and wasn't responding to you in the hospital? I was really happy to hear that all was well after that episode.

I'm not ready for my "babies" to be 2. . . how is it for you? No one thinks my kids are twins anymore because of their size difference. I'll bet you get that too. If someone asks how old one of them is I say "They'll be two in Nov.", or "they're twins, and they're almost 2." The response is always a shocked "They're twins??? Really??? (As if I'm making it up!) It is funny at times and annoying at others. Oh well.

Anyway, I just wanted to re-connect with a personal "hello" to someone with kids the same age as my own. Talk to you later!

Casey, mom to (DS) and , 22mo.

[Guest guest]

Casey, my girls are 25 months and I get exactly the same reactions from people. I always say "their 2" or whatever age they were and people are so surprised. What do I look like, a baby machine ?? (And after years of infertility treatments ,that's a LAUGH !!) It bugs me sometimes, but then I think a lot of the time people don't realise Annemieke is a DS baby.

Just wanted to add my 2 cents worth.

-----Original Message-----From: stephaniesmom200@... [mailto:stephaniesmom200@...]Sent: Sunday, September 30, 2001 2:05 AMMultiples-DS Subject: Re: Re: hello, I forget just how close our kids are in age. and will be 2 on Nov. 2, so they are almost 23 months. How are all of your kids doing? I miss hearing from you! Wasn't it who was SO sick with RSV and wasn't responding to you in the hospital? I was really happy to hear that all was well after that episode. I'm not ready for my "babies" to be 2. . . how is it for you? No one thinks my kids are twins anymore because of their size difference. I'll bet you get that too. If someone asks how old one of them is I say "They'll be two in Nov.", or "they're twins, and they're almost 2." The response is always a shocked "They're twins??? Really??? (As if I'm making it up!) It is funny at times and annoying at others. Oh well. Anyway, I just wanted to re-connect with a personal "hello" to someone with kids the same age as my own. Talk to you later! Casey, mom to (DS) and , 22mo. http://DSyndrome.com/Multiples

[Guest guest]

Your monitor blew up??? My goodness! I hope you are okay! Good to hear

from you.

~~

To laugh often and much; to win the respect of intelligent people and the

affection of children...to leave the world a better place...to know even one

life has breathed easier because you have lived. This is to have succeeded.

--- Ralph Waldo Emerson

Hello

Hello Everyone! Sorry I haven't posted lately....my monitor blew

up! I currently went NO MAIL as I checked my mail on my friends

computer & I have around 300 to catch up on......Hope everyone is

doing well!!! Also hope to get back on the net soon! I sure miss

everyone! Take care everyone!!

Love,

Barb

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Being Sick Community

Memorial Page

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Message Archives and Digest Attachment Pictures:-

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~~~~ *** ~~~ *** ~~~ *** ~~~~

“Hold on to what is good, even if it's a handful of earth. Hold on to what

you believe, even if it's a tree that stands by itself. Hold on to what you

must do even, if it's a long way from here. Hold on to your life, even if

it's easier to let go. " - Pueblo Prayer

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Awwwww Barb, Will miss ya!!! Come back as soon as ya can!!! Keep up your spirits and Health and give us a Hi every once in a while on your Friends computer, Tell her I said Thank-You Too!!!

{{{ Missing Hugs }}}

Helen

Hello Everyone! Sorry I haven't posted lately....my monitor blew up! I currently went NO MAIL as I checked my mail on my friends computer & I have around 300 to catch up on......Hope everyone is doing well!!! Also hope to get back on the net soon! I sure miss everyone! Take care everyone!! Love,Barb

[Guest guest]

Dear Casey,

sorry i haven't written in so long. The babies are great, they are at such a fun stage. Believe it or not we actually survived an airplane trip to colorado to visit my sister this summer and then a car trip to disney world. I worried about taking taylor to disney when she was 3, if anyone ever told me i would be taking triplets at this age i would have said they were crazy. i get the same comments and shocked looks from strangers. we don't go out all that much but when we do we always get the looking from one to the other "are they twins?" then they look at james and i swear i feel a lecture about birth control coming on. when i say no they are triplets, i really think some people get whiplash looking from one to the other. then there are some who are just incredibly nice. if you don't mind my asking does stephanie eat solid food and has she crawled or walked yet? james is still on baby food and supplemental formula. he is no where near walking, and pretty far away from crawling. i really don't have time to attend support group meetings so i hope you don't mind me asking. sorry to have gone on and on.

we are moving in 2 weeks, we finally bought a house. wish us luck!!!!!!!!

keep in touch,

julie mom to taylor 7, brittany, ally, and james (ds) 22 months

[Guest guest]

> from crawling. i really don't have time to attend support group meetings

> so i hope you don't mind me asking.

That's why we're here! ))

> we

> are moving in 2 weeks, we finally bought a house. wish us luck!!!!!!!!

CONGRATS! And good luck!

Cheers!

Sara

[Guest guest]

hi Don, nice to meet you!!! I am Marsha, Mom to two girls with asthma and

allergies and reflux (the youngest). I look foward in getting to know you.

marsha

[Guest guest]

Welcome to our family, Don!

I'm Ling from Singapore. Please do feel free to post

whenever you want to.

Ling

--- Don Higgins <don.higgins@...> wrote: > Hi all

>

> I've just joined. I have low vision and glaucoma

> following cataracts and 3

> detached retinas all starting at

> the age of 40 (I'm 56 now). I work full time as a

> software developer from

> my home. I'm active in Rotary

> and local homeowners assoc. and maintain several web

> sites. I'm interested

> in meeting others with low vision and glaucoma, and

> just meeting new friends

> around the world.

>

____________________________________________________________

[Guest guest]

Hello Don, Glad you have joined us!!! Sorry you are having problems though!!! Join right in a tell us all about yourself! I'm Helen from Ohio...

{{{ Welcoming Hugs }}}

Helen

Hi allI've just joined. I have low vision and glaucoma following cataracts and 3detached retinas all starting atthe age of 40 (I'm 56 now). I work full time as a software developer frommy home. I'm active in Rotaryand local homeowners assoc. and maintain several web sites. I'm interestedin meeting others with low vision and glaucoma, and just meeting new friendsaround the world.

HAPPY AUTUMN

ENJOY THE COLORS

[Guest guest]

So Sorry you are not feeling good ( Do you have migrains ??? If this continues, Please go see your Dr. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Now I will worry about you until I hear you are better !!! You haven't been feeling good now for several weeks... Time to see the DOC !!!

Keep us posted !!!

{{{ Healing Hugs }}}

Helen

Hello Group! Just a quick note to let you know that I'm still here, barely, with this headache, (feels like it is ready to explode), I've done nothing today but lay around on the couch all day. I'm so light headed & feel like I'm in a fog....Oh well!

Hope you all are doing o.k. haven't been on for a while lately, so I'll catch up on my mail soon hopefully. Take care & hang in there!

Love,

barb

[Guest guest]

Hi Barbara ( So sorry to hear about your headache :'o( Hope you start

feeling better soon!!!!

Jessi

[Guest guest]

) Hi Ling that was wonderful thanks. How are you doing!??! Feeling better

i hope!!

Jessi

[Guest guest]

That was beautiful !!!!!!!!!!!! THANKS for Sending it !!!

helen

[Guest guest]

Hi Char,

Glad to see you here. I know you are probably anxious about the surgeries your little ones will be going through. Try not to worry about it too much. In a few months you won't even be a ble to tell they had it! Welcome to the group. My name is Pam Houser and I have identical twin girls with D.S. They are 6 years old. I also have 2 sons, Dusty age 15 and Josh, age 20. Wow, I don't think anyone else on here has faternal twins both having DS. We would love to see some pictures of all your kids if you are able to scan them. We all love the pictures!!! I hope we all can help you in any way you need. We ask just about anything that is on a our minds. That's what we are here for!! Sorry to hear about your seperation. It is hard on the family, I know. The twins father and I separated when they were 3 and am divorced. It is hard on a marriage when both are not on the same page.

Welcome again. I can't wait to hear more about you all. Pam

Charlene Robbins <taqsium@...> wrote: I have twins, boy and girl born8/22/01 both with D.S. and my boy, Keane has PKU. They both also have theA/V heart defect. Keane is stable right now and has been home since he was 3weeks old but Kalena has been in and out of Children's Hospital withcomplications. They are now going to schedule her heart surgery because ofall the problems and she is finally big enough to have it!I also have an 11 y/o boy, who is the most wonderful, proud, bigbrother.I am also currently separated from my husband since I was 6 months pregnant.We are working well together as a team, but still struggle with our personaldifferences now and again.So just wanted to introduce the "baby birds" and the Robbins' Nest. I'm soglad you are all here for support.xoxoxoxoxCharxoxoxoxox_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Char - welcome to the list! I'm Judi, Mom to Sam

and , soon to be 5 year old identical twins

w/DS. Wow, fraternal b/g twins both w/DS! I don't

think I've ever heard of that happening before!

There's tons of families here on the list who have

fraternal twins where only one child has DS, and a few

w/identicals.

Hope you can post some pictures of your double

dumlin's . Some of us have pic's of our kids in the

files/photo section at the groups website for

multiples-ds if you want to check them out.

Glad you found us and can't wait to hear more about

your family. Make sure you let us know when Kalena

has her surgery so we can keep her in our prayers.

Judi

--- Charlene Robbins <taqsium@...> wrote:

> I have twins, boy and girl born

> 8/22/01 both with D.S. and my boy, Keane has PKU.

> They both also have the

> A/V heart defect. Keane is stable right now and has

> been home since he was 3

> weeks old but Kalena has been in and out of

> Children's Hospital with

> complications. They are now going to schedule her

> heart surgery because of

> all the problems and she is finally big enough to

> have it!

>

> I also have an 11 y/o boy, who is the most

> wonderful, proud, big

> brother.

> I am also currently separated from my husband since

> I was 6 months pregnant.

> We are working well together as a team, but still

> struggle with our personal

> differences now and again.

>

> So just wanted to introduce the " baby birds " and the

> Robbins' Nest. I'm so

> glad you are all here for support.

>

>

>

> xoxoxoxox

> Char

> xoxoxoxox

>

>

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp

>

>

__________________________________________________

[Guest guest]

Welcome Charlene, this is a great group for support.

My name is Katy Touve, I have B/G twins who just turned 2yrs

on 11 NOV, only my son has DS. I also have a 4yr old son who

loves his brother and sister a lot. Tyler was born very healthy

he had a very small ASD which closed by 18months. I will have to

make the same comment that some of the others have already stated,

you are the first that I have heard that have faternal B/G twins

both having DS.

Katy

mom to 4yrs and twins and Tyler(DS)2yrs

> I have twins, boy and girl born

> 8/22/01 both with D.S. and my boy, Keane has PKU. They both also

have the

> A/V heart defect. Keane is stable right now and has been home since

he was 3

> weeks old but Kalena has been in and out of Children's Hospital with

> complications. They are now going to schedule her heart surgery

because of

> all the problems and she is finally big enough to have it!

>

> I also have an 11 y/o boy, who is the most wonderful, proud,

big

> brother.

> I am also currently separated from my husband since I was 6 months

pregnant.

> We are working well together as a team, but still struggle with our

personal

> differences now and again.

>

> So just wanted to introduce the " baby birds " and the Robbins' Nest.

I'm so

> glad you are all here for support.

>

>

>

> xoxoxoxox

> Char

> xoxoxoxox

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Hi Charlene, I have twin boys who are 21 months old (Davey and Will). Davey has DS. I also have an 11 year old girl, Kelsey. Amy is 14 and a freshman in high school. This is a great group. Welcome. You will find a lot of support here. Hello I have twins, boy and girl born8/22/01 both with D.S. and my boy, Keane has PKU. They both also have theA/V heart defect. Keane is stable right now and has been home since he was 3weeks old but Kalena has been in and out of Children's Hospital withcomplications. They are now going to schedule her heart surgery because ofall the problems and she is finally big enough to have it!I also have an 11 y/o boy, who is the most wonderful, proud, bigbrother.I am also currently separated from my husband since I was 6 months pregnant.We are working well together as a team, but still struggle with our personaldifferences now and again.So just wanted to introduce the "baby birds" and the Robbins' Nest. I'm soglad you are all here for support.xoxoxoxoxCharxoxoxoxox_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Charlene and welcome to the list!!!

Congratulations on your beautiful babies - they are soooooo gorgeous. I am

Carolyn from New Zealand. Tony and I have 4 great kids and our youngest 2

girls both have Ds. Emma is now 5 1/2 and Nicki is 4 1/2. Nicki had heart

surgery for a PDA at 6 weeks of age and she also had Hydrops Fetalis (build

up of fluid inside her body). Our 2 older children just dote on their young

sisters and while it's very busy around here, I can't begin to tell you how

rewarding it is watching the girls accomplish so much.

I wish you all the best for Kalena's surgery and I hope they can schedule a

date soon. Great to have you here! This is a wonderful source of support

and information.

Carolyn

Mum to on 9, 8, Emma 5(Ds) and Nicki 4(Ds)

www.geocities.com/nz_mom/sykesfamily.html

Hello

> I have twins, boy and girl born

> 8/22/01 both with D.S. and my boy, Keane has PKU. They both also have the

> A/V heart defect. Keane is stable right now and has been home since he was

3

> weeks old but Kalena has been in and out of Children's Hospital with

> complications. They are now going to schedule her heart surgery because of

> all the problems and she is finally big enough to have it!

>

> I also have an 11 y/o boy, who is the most wonderful, proud, big

> brother.

> I am also currently separated from my husband since I was 6 months

pregnant.

> We are working well together as a team, but still struggle with our

personal

> differences now and again.

>

> So just wanted to introduce the " baby birds " and the Robbins' Nest. I'm so

> glad you are all here for support.

>

>

>

> xoxoxoxox

> Char

> xoxoxoxox

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> http://DSyndrome.com/Multiples

>

>

[Guest guest]

Hi Jodi,

Welcome back!

Can you please tell me your birthday again, so that I can add it into the

Birthday List?

Thanks,

Ling

Hello

Hi My name is Jodi. I used to be a member of tis group and lost my

internet. My profile is still in the profiles on the third page .

My email is now SexyJodie@... my aim name is Jodicee75. i

don't know who to contact to get all this changed in the b-day list

and am having trouble changing profile. anyway hello to everyone

from before and Howdy to all of you I haven't met

Jodi