Re: Mother of Down Syndrome Child is McCain's chosen one!

[Guest guest]

Breaks my heart to hear this... Sometimes, the painful feelings come

right back for me too... many of them I try very hard to forget, from

the nicu to today...

....putting them on the bus (a typical bus for a change with seatbelts

for all the kids on the bus!) this morning and yesterday morning feeling

helpless when other parents stand around and stare while my 3 kids

bounce off each other and run off in 3 different directions on the

street, as their kids just dutifully stand there quietly waiting for the

bus... mine yell weird vocalizations & whines that make your brain

shake... so tired of it sometimes and so isolated sometimes.... dealt

with the typical interview questions too - yes they are repeating

kindergarten, well they have sensory issues that interfered with

accessing their education - (really its behavior too)... why i haven't

gone to the bottle or drugs and am still standing, I don't know...

just very grateful I have you guys to help us all get thru it together...

Mom to Haley & Nikki, almost 6 yr identical twin girls both w/DS, and

, 4 1/2 yr son

Gayla Palmero wrote:

> Yikes , that is scary and sad!

>

> On Tue, Sep 2, 2008 at 7:45 PM,

> <henderson_laura@... > wrote:

>

> Gayla,

>

> I can relate with not being able to hold your baby. One nurse let

> me start breast feeding Nicala and then her assigned nurse found

> out and cut us off. I would walk into the NICU and find this

> particular nurse holding Nicala (rocking her) and then wouldn't

> let me hold her...said Nicala was tired out. I later found out

> that this nurse had only boys and was pregnant with another

> (boy).....don't know if that had anything to do with it but it was

> weird. I ended up getting the nurse that was assigned for

> (after going to the head of the NICU) in charge of Nicala as well

> and things improved.

>

> It was weeks b 4 I was able to hold .

>

> Bringing back too many memories.....one nurse accidentally

> dropped/rolled Nicala out of her incubator and she just missed

> hitting the floor because the nurse pulled all the feeding and IV

> tubes attached to her before she hit. I was right there watching

> the whole thing!

>

> And then there was the time (one of many) that wasn't

> breathing and another couple with a baby in the unit wouldn't stop

> leaning on his incubator so that the nurses could bag him.

>

> Both had to have spinal taps done with no freezing (spinal

> meningitis was going around the NICU)

>

>

>

>

>

>

>>

>> Very interesting! I don't know anything

>> about Gov. Palin so I just googled her.

>> The story that came up first about her

>> being chosen for VP had a brief bio about

>> her including that she has a child who

>> " suffers from Down's syndrome. "

>> Hopefully that isn't the tone/language

>> they use when talking about her family

>> during the campa ign! I'm sure we'll be

>> learning lots more about her in the

>> coming months…

>>

>> Eileen

>> Mom to Owen-6, Maeve-4, Colin (Ds) and

>> -9mos

>>

>>

------------------------------------------------------------------------

>> *From:* Multiples-DS@ yahoogroups. com

>> [mailto:Multiples- DSyahoogroups (DOT)

>> com]*On Behalf Of *Joyce Fledderjohann

>> *Sent:* Friday, August 29, 2008 12:08 PM

>> *To:* multiples-ds@ yahoogroups. com

>> *Subject:* RE: Mother of

>> Down Syndrome Child is McCain's

>> chosen one!

>>

>>

>>

>>

>> I just saw that Palin is

>> McCain's choice! She just had a Down

>> Syndrome child earlier this year and

>> she's the Govenor of Alaska. I couldn't

>> help but be a big mouth to this site,

>> since I'm the mom to three Down Syndrome

>> kids!

>>

>> **Joyce**

>> wife to Mike 33 wonderful years

>> mom to seven

>> -32, Leah-31,

>> Mikey-27, **-DS- 25**,

>> -22, **-15-DS**,

>> and **-11- DS/Autism***

>>

>> *

>>

------------------------------------------------------------------------

>>

>> To: Multiples-DS@ yahoogroups. com

>> From: igercakcfl (DOT) rr.com <http://rr.com/>

>> Date: Wed, 20 Aug 2008 18:01:50 -0400

>> Subject: Re: Introduction

>>

>> Hello Sandi,

>> Sounds like a busy house. 20 months is

>> alot of fun. I hope you

>> will find the answers to all you

>> questions, here and in the future.

>> Irene

>> ZackDS/ADHD, , & 10

>> Jake 12

>>

>

> * Introduction

>

> Hello to everyone. We have enjoyed

> reading all the posts this last

> year and have found the group

> extremely informative.

>

> We have 20 month old boy twins

> (ds) and Liam. Tommy will be

> happy to tell you that he is 12 minuts

> older than Liam. Tommy also

> has Hirschsprung' s disease (he had 5

> inches of his colon removed and

> reconnected thru what is termed a pull

> thru surgery). Tommy had an

> NG tube for his first 10 months of

> life and now has a Gtube. He

> uses sign lanugage to communicate, can

> sign more, eat, itsy bitsy

> sp ider song, dog and happy. He is one

> of four of our children and

> continues to be our inspiration and

> joy. Liam is a healthy little

> toddler and LOVES his brother, many

> times walking over to Tommy and

> rubbing his brothers back.

>

> We look forward to checking this

> message board ofte n. Our current

> questions are: does anyone use daycare

> with their kiddos that have

> ds? does anyone else have gtubes?

> kinda curious about granulation

> tissue issues with that.

>

> Lots of love to everyone, Sandi

> McMillan (wife to Colin, momma to

> Hannah 14, 13, (Ds and

> HD pull thru) and Liam (almost

> 2 years). www.tommyupdate

> <http://www.tommyupdate/>. blogspot. com

>

>

>

>

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> --

> Gayla

>

>

>

>

> --

> Gayla

>

>

>

>

> --

> Gayla

>

[Guest guest]

,

I am sorry that it's so challenging for you, it will probably get easier

as they continue to make progress, what ever that progress is, you

will feel proud of all your hard work.

Never let the other parents make you or your children feel inferior,

let them walk 1 day in your shoes. They may stare but what they are

probably thinking is I could never do it, how does she every day,

stick with it we are here for you Irene

* Introduction

>>

>> Hello to everyone. We have enjoyed

>> reading all the posts this last

>> year and have found the group

>> extremely informative.

>>

>> We have 20 month old boy twins

>> (ds) and Liam. Tommy will be

>> happy to tell you that he is 12 minuts

>> older than Liam. Tommy also

>> has Hirschsprung' s disease (he had 5

>> inches of his colon removed and

>> reconnected thru what is termed a pull

>> thru surgery). Tommy had an

>> NG tube for his first 10 months of

>> life and now has a Gtube. He

>> uses sign lanugage to communicate, can

>> sign more, eat, itsy bitsy

>> sp ider song, dog and happy. He is one

>> of four of our children and

>> continues to be our inspiration and

>> joy. Liam is a healthy little

>> toddler and LOVES his brother, many

>> times walking over to Tommy and

>> rubbing his brothers back.

>>

>> We look forward to checking this

>> message board ofte n. Our current

>> questions are: does anyone use daycare

>> with their kiddos that have

>> ds? does anyone else have gtubes?

>> kinda curious about granulation

>> tissue issues with that.

>>

>> Lots of love to everyone, Sandi

>> McMillan (wife to Colin, momma to

>> Hannah 14, 13, (Ds and

>> HD pull thru) and Liam (almost

>> 2 years). www.tommyupdate

>> <http://www.tommyupdate/>. blogspot. com

>>

>>

>>

>>

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>>

>>

>>

>> --

>> Gayla

>>

>>

>>

>>

>> --

>> Gayla

>>

>>

>>

>>

>> --

>> Gayla

>>

>

> ------------------------------------

>

> More pictures of our kids:

> http://www.pbase.com/urriegrl/multiplesds

[Guest guest]

Oh ,

What scary memories and terrible feelings those day s must have been. Sorry to

hear how raw those feelings still are, hang in there Irene

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy sp ider song, dog and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board ofte n. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot. com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

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[Guest guest]

Gayla,

There are so many BAD stories about how insensitive we moms have been treated,

as if our sick babies aren't enough to send us over the deep end, then we have to deal

with these nurses! I wish we could compile these stories and have them sent to medical

students. Irene

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy sp ider song, dog and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board ofte n. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot. com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

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[Guest guest]



,

My experience was similar to yours, while I was still on the operating

table and had only delivered 1 of my 3 babies the nurse comes over and

stands over my face and asks, "did you have an amnio?" and ran off leaving

me to imagine what was wrong with my baby, I started to hyperventalate.

I had a big talk w/ that hospital a month later.

Irene

Introduction

Hello to everyone. We have enjoyed reading all the posts this last year and have found the group extremely informative. We have 20 month old boy twins (ds) and Liam. Tommy will behappy to tell you that he is 12 minuts older than Liam. Tommy also has Hirschsprung' s disease (he had 5 inches of his colon removed and reconnected thru what is termed a pull thru surgery). Tommy had an NG tube for his first 10 months of life and now has a Gtube. He uses sign lanugage to communicate, can sign more, eat, itsy bitsy sp ider song, dog and happy. He is one of four of our children and continues to be our inspiration and joy. Liam is a healthy little toddler and LOVES his brother, many times walking over to Tommy andrubbing his brothers back.We look forward to checking this message board ofte n. Our current questions are: does anyone use daycare with their kiddos that have ds? does anyone else have gtubes? kinda curious about granulation tissue issues with that. Lots of love to everyone, Sandi McMillan (wife to Colin, momma to Hannah 14, 13, (Ds and HD pull thru) and Liam (almost2 years). www.tommyupdate. blogspot. com

Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How

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[Guest guest]

Marcia,That was special. You came up with the words I could not. Thank you for being such a special friend to all of us. Mom to Amy 20, Kelsey 18, Davey 8 (DS), and Will 8Sent via BlackBerry by AT&TFrom: Rrietmann@...Date: Wed, 3 Sep 2008 11:00:51 EDTTo: <Multiples-DS >Subject: Re: Mother of Down Syndrome Child is McCain's chosen one! , We are here for you during the difficult times. I do understand how challenging it is with the school/social issues. Sara is now 13 and my heart has been broken many times, as she began to realize that she is often ignored while trying to be part of a group, that she does not get invited to many parties, that she does need extra help in school. When I find myself going to that place of sadness, I tell myself that to be there is not helpful, so I try to move to a place where I feel more positive about everything and often tell myself I am on that different journey (to Holland--if you have ever read that story) and then I try to problem-solve and come up with ideas to help resolve whatever issue that is making either her or me sad. As far as behavior issues go, when Sara was in Kindergarten and First grade, the teachers really followed through with consequences for not behaving and were consistent. (More than I am). I appreciated that, as it has helped her with the rest of her schooling. MarciaMom to Sara (DS) and 13 and Lucas 17 In a message dated 9/3/2008 6:07:59 A.M. Pacific Daylight Time, igercakcfl (DOT) rr.com writes:,I am sorry that it's so challenging for you, it will probably get easieras they continue to make progress, what ever that progress is, youwill feel proud of all your hard work.Never let the other parents make you or your children feel inferior,let them walk 1 day in your shoes. They may stare but what they areprobably thinking is I could never do it, how does she every day,stick with it we are here for you Irene* Introduction>>>> Hello to everyone. We have enjoyed>> reading all the posts this last>> year and have found the group>> extremely informative.>>>> We have 20 month old boy twins >> (ds) and Liam. Tommy will be>> happy to tell you that he is 12 minuts>> older than Liam. Tommy also>> has Hirschsprung' s disease (he had 5>> inches of his colon removed and>> reconnected thru what is termed a pull>> thru surgery). Tommy had an>> NG tube for his first 10 months of>> life and now has a Gtube. He>> uses sign lanugage to communicate, can>> sign more, eat, itsy bitsy>> sp ider song, dog and happy. He is one>> of four of our children and>> continues to be our inspiration and>> joy. Liam is a healthy little>> toddler and LOVES his brother, many>> times walking over to Tommy and>> rubbing his brothers back.>>>> We look forward to checking this>> message board ofte n. Our current>> questions are: does anyone use daycare>> with their kiddos that have>> ds? does anyone else have gtubes?>> kinda curious about granulation>> tissue issues with that.>>>> Lots of love to everyone, Sandi>> McMillan (wife to Colin, momma to>> Hannah 14, 13, (Ds and>> HD pull thru) and Liam (almost>> 2 years). www.tommyupdate>> <http://www.tommyupdate/>. blogspot. com>>>>>>>> ------------------------------------------------------------------------>> Talk to your Yahoo! Friends via Windows>> Live Messenger. Find Out How>> >> <http://www.windowslive.com/explore/messenger?ocid=TXT_TAGLM_WL_messenger_yahoo_082008>>>>>>> ------------------------------------------------------------------------>> Get the MapQuest Toolbar>> >> <http://mapquest.com/toolbar?ncid=mpqmap00050000000010>.>> Directions, Traffic, Gas Prices More!>>>> ------------------------------------------------------------------------>> Get the MapQuest Toolbar>> >> <http://mapquest.com/toolbar?ncid=mpqmap00050000000010>.>> Directions, Traffic, Gas Prices More!>>>>>>>>>> -- >> Gayla>>>>>>>>>> -- >> Gayla>>>>>>>>>> -- >> Gayla>>>> ------------------------------------>> More pictures of our kids:> http://www.pbase.com/urriegrl/multiplesds

[Guest guest]

Keep the faith , I know sometimes that can sound empty. It is amazing how strong all those memories can be and how quickly you can be transported back to painful times. There are days when I look at when he is sleeping and cry. Not for what he will or will not accomplish, but that I may not always be there to watch over him and I love him like no one else ever will. Knowing that he will meet people who think he should not have been born, breaks my heart. I think the way he loves me back, so unconditionally, so fully, that makes me smile when I want to cry. He is the sweetest boy, every morning when I take him out of his bed, he wraps his little arms around my neck and whispers 'Mama' in my ear and it is so drippy and sweet, it makes all the worry vanish for a while. If nothing else, having has really made me appreciate all the little things in life. Stay strong!

a

mom to Meg14,Jack11,Lucy7,(DS) & 33 months

Re: Introduction

>>

>> Hello Sandi,

>> Sounds like a busy house. 20 months is

>> alot of fun. I hope you

>> will find the answers to all you

>> questions, here and in the future.

>> Irene

>> =2

0 ZackDS/ADHD, , & 10

>> Jake 12

>> >

> * Introduction

> > Hello to everyone. We have enjoyed

> reading all the posts this last > year and have found the group

> 20 extremely informative. >

> We have 20 month old boy twins

> (ds) and Liam. Tommy will be

> happy to tell you that he is 12 minuts

> older than Liam. Tommy also > has Hirschsprung' s disease (he had 5

> inches of his colon removed and > reconnected thru what is termed a pull

> thru surgery). Tommy had an > NG tube for his first 10 months of

> life and now has a Gtube. He > uses sign lanugage to communicate, can

> sign more, eat, itsy bitsy > =2

0 sp ider song, dog and happy. He is one

> of four of our children and > continues to be our inspiration and

> joy. Liam is a healthy little > toddler and LOVES his brother, many

> times walking over to Tommy and

> rubbing his brothers back.

>

> We look forward to checking this

> message board ofte n. Our current > questions are: does anyone use daycare

> with their kiddos that have > ds? does anyone else have gtubes?

> kinda curious about granulation > tissue issues with that. >

> Lots of love to everyone, Sandi

> McMillan (wife to Colin, momma to > Hannah 14, 13, (Ds and

> HD pull thru) and Liam (almost

> 2 years). www.tommyupdate

> <http://www.tommyupdate/>. blogspot. com

>

> > > ------------------------------------------------------------------------

> Talk to your Yahoo! Friends via Windows

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>

> -- > Gayla

>

>

>

>

> -- > Gayla

>

>

>

>

> -- > Gayla

> ------------------------------------

More pictures of our kids:

http://www.pbase.com/urriegrl/multiplesds

[Guest guest]

Just checking in after a long time... hang in there - I always look for your entries here because I can see that you have it together and have great advice for the rest of us.

I have also been reading the entries on the terrible hospital stories...I am a nurse, and it saddens me to read your encounters. There are good and bad in all professions, but I have made it a mission of mine to be an educator for my co-workers in the hospital that I work at. Every chance I get, I tell the other nurses how it felt to be isolated at the hospital. Everyone is different, but I feel strongly that a balance between showing empathy for the parents, (for their possible initial grief and shock) and being postive and encouraging is probably a good way to go. As far as Palin goes, I hope that it will be a good thing for us and our kids. I was excited to see that she was chosen, knowing that Down Syndrome will get some press. When we found out Adrienne had DS, (prenatally) we waited for a week or so to tell others. We wanted to think

about it for awhile ourselves and be ok with it when we told our families. I remember Mike telling me "if they see we are ok, they will be too" I also believe that if Trig is only 4 months old, the Palins probably are enjoying him as their baby and will get into more of the challenges and joys that we all face daily as he gets older.

Did anyone see the Dateline last Friday? Ann Curry went to Serbia to investigate their orphanages there and showed a father who had followed the advice of their doctor when his son was born with DS 11 years ago and sent him to the institution. The boy could barely walk and didn't smile or talk. I wanted to cry.

One last thing...tonight on the CBS evening news there is supposed to be a story about prenatal testing for DS, etc. They apparently did interviews with a few families, the DS support group in Kansas City and a 16 year old self advocate. Hopefully it will be good.

Hope everyone has had a good start to the school year

Cyndy

Madeline (11), Kayley & Adrienne ds (3 1/2)

* Introduction>>>> Hello to everyone. We have enjoyed>>

reading all the posts this last>> year and have found the group>> extremely informative.>>>> We have 20 month old boy twins >> (ds) and Liam. Tommy will be>> happy to tell you that he is 12 minuts>>

older than Liam. Tommy also>> has Hirschsprung' s disease (he had 5>> inches of his colon removed and>> reconnected thru what is termed a pull>> thru surgery). Tommy had an>> NG tube for his first 10 months of>>

life and now has a Gtube. He>> uses sign lanugage to communicate, can>> sign more, eat, itsy bitsy>> sp ider song, dog and happy. He is one>> of four of our children and>> continues to be our inspiration and>>

joy. Liam is a healthy little>> toddler and LOVES his brother, many>> times walking over to Tommy and>> rubbing his brothers back.>>>> We look forward to checking this>> message board ofte n. Our current>>

questions are: does anyone use daycare>> with their kiddos that have>> ds? does anyone else have gtubes?>> kinda curious about granulation>> tissue issues with that.>>>> Lots of love to everyone, Sandi>>

McMillan (wife to Colin, momma to>> Hannah 14, 13, (Ds and>> HD pull thru) and Liam (almost>> 2 years). www.tommyupdate>> <http://www.tommyupd ate/>. blogspot. com>>>>>>>> ------------ ---------

--------- --------- --------- --------- --------- ------>> Talk to your Yahoo! Friends via Windows>> Live Messenger. Find Out How>> >> <http://www.windowsl ive.com/explore/ messenger? ocid=TXT_ TAGLM_WL_ messenger_ yahoo_082008>>>>>>> ------------ --------- --------- --------- --------- --------- --------- ------>> Get the MapQuest Toolbar>> >> <http://mapquest. com/toolbar? ncid=mpqmap00050 000000010>.>>

Directions, Traffic, Gas Prices More!>>>> ------------ --------- --------- --------- --------- --------- --------- ------>> Get the MapQuest Toolbar>> >> <http://mapquest. com/toolbar? ncid=mpqmap00050 000000010>.>> Directions, Traffic, Gas Prices More!>>>>>>>>>> -- >> Gayla>>>>>>>>>> -- >>

Gayla>>>>>>>>>> -- >> Gayla>>>> ------------ --------- --------- ------>> More pictures of our kids:> http://www.pbase. com/urriegrl/ multiplesdsYahoo ! Groups Links>>>> ------------ --------- --------- ------More pictures of our kids:http://www.pbase. com/urriegrl/ multiplesdsYahoo ! Groups Links<*> To visit your group on the web, go to: http://groups. yahoo.com/ group/Multiples- DS/<*> Your email settings: Individual Email | Traditional<*> To change settings online go to: http://groups. yahoo.com/ group/Multiples- DS/join (Yahoo! ID required)<*> To change settings via email: mailto:Multiples- DS-digest@ yahoogroups. com mailto:Multiples-

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