RE: Welcome nne from Sweden!

[Guest guest]

nne...

Welcome to our group!! You all found out so early about your grandaughters

diagnosis! I THOUGHT we had another member from Sweden, or the surrounding

area... perhaps one of the administrators can verify~ it would be WONDERFUL to

be

able to connect you if that's possible! Look forward to hearing more from

you and your family. Prayers with your grandaughter as she faces surgery.

Angel

Mom to 11 MDS/Hirschsprung's Disease

Lance 15, Tyler 12, 9

Jaeda 7 and Shayne 1

[Guest guest]

Donna,

Hi Stranger! Have you had your surgery yet? If so I hope all is well and you

are recovering quickly!

Welcome nne from Sweden!

Please welcome nne and her family!

Marinaane wrote:

Hi.

I am the grandmother of a little girl born 1 week ago. She has MDS

and her heart has to have surgery in a couple of months. In Sweden

there is only 2 children each year born with MDS. The chance of ever

meeting another one is minimal. We want to find out more about MDS

and what it will mean for the future. Hopefully also find other

families to chat with. We hope to find others that may guide us a

bit. (It¨s not nesserary to do misstakes others already have done,

there are always new ones you you can do.) Poor tranlation maybe.

but thats how we feel.

Hope to hear from you

nne

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

Become a member of IMDSA at http://www.imdsa.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

Hi

Unfortunately our granddoughter; Lovisa, is not doing very well. She can not

keep the oxygen in her blood up. They give her as much oxygen they can

without damaging the lungs. Is this a common problem? They say the surgeon

wants her to be at least 4 kg before the surgery, and she is only 2.5 kg.

nne

Re: Welcome nne from Sweden!

Donna,

Hi Stranger! Have you had your surgery yet? If so I hope all is well and

you are recovering quickly!

Welcome nne from Sweden!

Please welcome nne and her family!

Marinaane wrote:

Hi.

I am the grandmother of a little girl born 1 week ago. She has MDS

and her heart has to have surgery in a couple of months. In Sweden

there is only 2 children each year born with MDS. The chance of ever

meeting another one is minimal. We want to find out more about MDS

and what it will mean for the future. Hopefully also find other

families to chat with. We hope to find others that may guide us a

bit. (It¨s not nesserary to do misstakes others already have done,

there are always new ones you you can do.) Poor tranlation maybe.

but thats how we feel.

Hope to hear from you

nne

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

Become a member of IMDSA at http://www.imdsa.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

nne,

I can be a problem especially if the child is born

premature. People with Down syndrome sometime do have

respitory problems.

And, most surgeons like to wait till the child is

bigger and stronger before they preform surgery.

I will keep you and your family in my prayers. Please

keep us updated.

Kristy

--- nne Manell wrote:

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

Hi

Unfortunately our granddoughter; Lovisa, is not doing

very well. She can not

keep the oxygen in her blood up. They give her as much

oxygen they can

without damaging the lungs. Is this a common problem?

They say the surgeon

wants her to be at least 4 kg before the surgery, and

she is only 2.5 kg.

nne

Re: Welcome nne from Sweden!

Donna,

Hi Stranger! Have you had your surgery yet? If so I

hope all is well and

you are recovering quickly!

Welcome nne from Sweden!

Please welcome nne and her family!

Marinaane wrote:

Hi.

I am the grandmother of a little girl born 1 week

ago. She has MDS

and her heart has to have surgery in a couple of

months. In Sweden

there is only 2 children each year born with MDS.

The chance of ever

meeting another one is minimal. We want to find out

more about MDS

and what it will mean for the future. Hopefully also

find other

families to chat with. We hope to find others that

may guide us a

bit. (It¨s not nesserary to do misstakes others

already have done,

there are always new ones you you can do.) Poor

tranlation maybe.

but thats how we feel.

Hope to hear from you

nne

Won't you please consider adding your personal story

on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

Become a member of IMDSA at http://www.imdsa.com

*************************************************

MDS MESSAGE BOARD -

http://www.mosaicdownsyndrome.com/discus

*************************************************