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Re: ok, new baby daniel update.....

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Posted
Posted

Thank God! This is a great update!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

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Subject: ok, new baby daniel update.....

To: MosaicDS

Date: Monday, March 23, 2009, 7:59 PM

so the scare has gone down quite a bit....

he is not in congestive heart failure, yet... he has been diagnosed failure to

thrive....however today i took him in and he was at 8lbs 1.6 oz... yay!!!!!!!!!

!!!! almost a pound in a few days...so i am gonna give it a week of nursing him

to see if i have to stop doing that or not. i am planning on attending confrence

at this point, it will of course all depend on how things are going with his

heart surgery and all. i am exhausted. i am also looking to be a vendor at the

event and will try to post a pic of the bracelets i am making for the groups

support,,i am also linking those of you who have a home based business or blog

about mosaic ds, please send me your links, i will put you on my page.... the

website addy is www.thelittlerbouti que.com

i will have so much stuff up on the next couple of days.

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Posted

Hi ,

 

I am glad to hear that is doing fine.  You don't have to give up on the

nursing you can supplement too, and just alternate if you have to.

 

I will still include him in my prayers.

 

R. Green

IMDSA Legislative Officer

IMDSA.org

Subject: ok, new baby daniel update.....

To: MosaicDS

Date: Monday, March 23, 2009, 8:59 PM

so the scare has gone down quite a bit....

he is not in congestive heart failure, yet... he has been diagnosed failure to

thrive....however today i took him in and he was at 8lbs 1.6 oz... yay!!!!!!!!!

!!!! almost a pound in a few days...so i am gonna give it a week of nursing him

to see if i have to stop doing that or not. i am planning on attending confrence

at this point, it will of course all depend on how things are going with his

heart surgery and all. i am exhausted. i am also looking to be a vendor at the

event and will try to post a pic of the bracelets i am making for the groups

support,,i am also linking those of you who have a home based business or blog

about mosaic ds, please send me your links, i will put you on my page.... the

website addy is www.thelittlerbouti que.com

i will have so much stuff up on the next couple of days.

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That is great to hear . I nursed my son and part of the time used formula

because he needed the extra calories anyways. I had to pump most of the time for

a while. Whew it was a lot of work at times with the pumping but he just ended

up perfering the bottle which contained mommy milk still and some formula. But

the doctors told me he would NEVER be able to breast feed because of his

diagnosis. Well they were wrong. So just keep it up as much you can! Good for

you for keeping at it! And like I said, if you ever want to talk regarding the

heart surgery feel free to contact me by phone or email. 

Marriah, Gideons mommy

Subject: ok, new baby daniel update.....

To: MosaicDS

Date: Monday, March 23, 2009, 5:59 PM

so the scare has gone down quite a bit....

he is not in congestive heart failure, yet... he has been diagnosed failure to

thrive....however today i took him in and he was at 8lbs 1.6 oz... yay!!!!!!!!!

!!!! almost a pound in a few days...so i am gonna give it a week of nursing him

to see if i have to stop doing that or not. i am planning on attending confrence

at this point, it will of course all depend on how things are going with his

heart surgery and all. i am exhausted. i am also looking to be a vendor at the

event and will try to post a pic of the bracelets i am making for the groups

support,,i am also linking those of you who have a home based business or blog

about mosaic ds, please send me your links, i will put you on my page.... the

website addy is www.thelittlerbouti que.com

i will have so much stuff up on the next couple of days.

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Posted
Posted

Marriah! are you online... I tried to send you a message a few days ago, did

you get it?

mortonc29@...

On Mon, Mar 23, 2009 at 10:30 PM, marriah buhman wrote:

> That is great to hear . I nursed my son and part of the time used

> formula because he needed the extra calories anyways. I had to pump most of

> the time for a while. Whew it was a lot of work at times with the pumping

> but he just ended up perfering the bottle which contained mommy milk still

> and some formula. But the doctors told me he would NEVER be able to breast

> feed because of his diagnosis. Well they were wrong. So just keep it up as

> much you can! Good for you for keeping at it! And like I said, if you ever

> want to talk regarding the heart surgery feel free to contact me by phone or

> email.

> Marriah, Gideons mommy

>

>

>

>

> From: <navygrl7578@... <navygrl7578%40yahoo.com>>

> Subject: ok, new baby daniel update.....

> To: MosaicDS <MosaicDS%40yahoogroups.com>

> Date: Monday, March 23, 2009, 5:59 PM

>

> so the scare has gone down quite a bit....

> he is not in congestive heart failure, yet... he has been diagnosed failure

> to thrive....however today i took him in and he was at 8lbs 1.6 oz...

> yay!!!!!!!!! !!!! almost a pound in a few days...so i am gonna give it a

> week of nursing him to see if i have to stop doing that or not. i am

> planning on attending confrence at this point, it will of course all depend

> on how things are going with his heart surgery and all. i am exhausted. i am

> also looking to be a vendor at the event and will try to post a pic of the

> bracelets i am making for the groups support,,i am also linking those of you

> who have a home based business or blog about mosaic ds, please send me your

> links, i will put you on my page.... the website addy is www.thelittlerbouti

> que.com

> i will have so much stuff up on the next couple of days.

>

>

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Posted
Posted

truett had failure to thrive and i knew he would never go back to the breast

but he actually fed perfectly from the breast and sloppy from a bottle it amazed

all of the nicu doctors and nurses. we supplemented while we where in the nicu

but he was back to breast exclusive by the time we went home. i was so happy. it

sounds like daniel has turned the corner and is gonna do great. drs just expect

children with ds or mds to never be able to nurse and it just isnt true. truett

is 12 months and he has only had one sinus infection that required antibiotics

so if you can stick with it. good luck and god bless

Sent from AT & T's Wireless network using Mobile Email

- ok, new baby daniel update.....

To: MosaicDS

Date: Monday, March 23, 2009, 5:59 PM

so the scare has gone down quite a bit....

he is not in congestive heart failure, yet... he has been diagnosed failure to

thrive....however today i took him in and he was at 8lbs 1.6 oz... yay!!!!!!!!!

!!!! almost a pound in a few days...so i am gonna give it a week of nursing him

to see if i have to stop doing that or not. i am planning on attending confrence

at this point, it will of course all depend on how things are going with his

heart surgery and all. i am exhausted. i am also looking to be a vendor at the

event and will try to post a pic of the bracelets i am making for the groups

support,,i am also linking those of you who have a home based business or blog

about mosaic ds, please send me your links, i will put you on my page.... the

website addy is www.thelittlerbouti que.com

i will have so much stuff up on the next couple of days.

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Posted
Posted

Good Thing i did not suspect that had MDS until 4 months - she nursed

so well - I did not want to stop but I eventually did at 7 months.

Darlene - mom to (12) and (10)

We will be at the conference in July!!! Our Third!

On Tue, Mar 24, 2009 at 12:17 PM, Shaffer wrote:

> truett had failure to thrive and i knew he would never go back to the

> breast but he actually fed perfectly from the breast and sloppy from a

> bottle it amazed all of the nicu doctors and nurses. we supplemented while

> we where in the nicu but he was back to breast exclusive by the time we went

> home. i was so happy. it sounds like daniel has turned the corner and is

> gonna do great. drs just expect children with ds or mds to never be able to

> nurse and it just isnt true. truett is 12 months and he has only had one

> sinus infection that required antibiotics so if you can stick with it. good

> luck and god bless

>

>

> Sent from AT & T's Wireless network using Mobile Email

>

> - ok, new baby daniel update.....

> To: MosaicDS <MosaicDS%40yahoogroups.com>

> Date: Monday, March 23, 2009, 5:59 PM

>

> so the scare has gone down quite a bit....

> he is not in congestive heart failure, yet... he has been diagnosed failure

> to thrive....however today i took him in and he was at 8lbs 1.6 oz...

> yay!!!!!!!!! !!!! almost a pound in a few days...so i am gonna give it a

> week of nursing him to see if i have to stop doing that or not. i am

> planning on attending confrence at this point, it will of course all depend

> on how things are going with his heart surgery and all. i am exhausted. i am

> also looking to be a vendor at the event and will try to post a pic of the

> bracelets i am making for the groups support,,i am also linking those of you

> who have a home based business or blog about mosaic ds, please send me your

> links, i will put you on my page.... the website addy is www.thelittlerbouti

> que.com

> i will have so much stuff up on the next couple of days.

>

>

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Posted
Posted

Yeah, that is what they told me about my son, but he actually nursed well from

birth.

>

>

>

> Subject: ok, new baby daniel update.....

> To: MosaicDS

> Date: Monday, March 23, 2009, 5:59 PM

>

>

>

>

>

>

> so the scare has gone down quite a bit....

> he is not in congestive heart failure, yet... he has been diagnosed failure to

thrive....however today i took him in and he was at 8lbs 1.6 oz... yay!!!!!!!!!

!!!! almost a pound in a few days...so i am gonna give it a week of nursing him

to see if i have to stop doing that or not. i am planning on attending confrence

at this point, it will of course all depend on how things are going with his

heart surgery and all. i am exhausted. i am also looking to be a vendor at the

event and will try to post a pic of the bracelets i am making for the groups

support,,i am also linking those of you who have a home based business or blog

about mosaic ds, please send me your links, i will put you on my page.... the

website addy is www.thelittlerbouti que.com

> i will have so much stuff up on the next couple of days.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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Posted
Posted

Isn't it funny how the doctors just automatically assumed that our children

wouldn't be able to nurse. Ours said the same with Zoe and her cardiologist

really made a point to keep tabs on her weight. He said that if she didn't gain

at least a pound a month, that I would have to stop. WELL, that became my

obsession!! I nursed, and pumped, and supplemented constantly and yes- Zoe

gained 1 pound a month! (no more, no less haha) I actually cried when I had to

stop nursing her after the heart surgery b.c she was producing Kile and we had

to put her on a fat free formula. Oh my- if you run into that... I'll be glad

to give you some tips :-)

Suzanne (mom to Zoe- 20 mo MDS

> >

> > From: <navygrl7578@... <navygrl7578%40yahoo.com>>

> > Subject: ok, new baby daniel update.....

> > To: MosaicDS <MosaicDS%40yahoogroups.com>

> > Date: Monday, March 23, 2009, 5:59 PM

> >

> > so the scare has gone down quite a bit....

> > he is not in congestive heart failure, yet... he has been diagnosed failure

> > to thrive....however today i took him in and he was at 8lbs 1.6 oz...

> > yay!!!!!!!!! !!!! almost a pound in a few days...so i am gonna give it a

> > week of nursing him to see if i have to stop doing that or not. i am

> > planning on attending confrence at this point, it will of course all depend

> > on how things are going with his heart surgery and all. i am exhausted. i am

> > also looking to be a vendor at the event and will try to post a pic of the

> > bracelets i am making for the groups support,,i am also linking those of you

> > who have a home based business or blog about mosaic ds, please send me your

> > links, i will put you on my page.... the website addy is www.thelittlerbouti

> > que.com

> > i will have so much stuff up on the next couple of days.

> >

> >

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