Re: New to all of this

[Guest guest]

Hi, How is your daughter doing in school? Did you notice anything about her?

My daughter will be 6 on April 21. I had an amnio done which came back

negative. I found out about the MDS when she was a month old.

It seems to me that if you haven't noticed anything in all these years that

she is pretty high functioning. Have you told the school about this? I

don't think I would do anything different unless she needed any special

services, like speech. Also if in all this time no one else has said

anything I don't think I would mention it.

She is still your same daughter that you love. My daughter is a sweet loving

child who I love in a way that is hard to describe. She has brought so much

joy in my life and I wouldn't want her any other way. She has taught me and

my other two children so much. I am a single Mom and she is a blessing to

have.

Tell us more about your daughter.

Take care,

Jeanne (Mom to Nicky 12, le 11 and 6 MDS)

[Guest guest]

Welcome tho the list Kaydo,

What a shock for you. I learned about my daughter when she was only a week

or two old. I had a conversation with my Dr. recently and he shared with me

that if I had been with the Dr. that he consulted with when Mahrya was born

I probably would not have found out about her diagnosis until she was much

older. I was thankful to him that he was up front with me at the time, even

though he knew it would be a difficult thing. Your daughter must be doing

quite well to not have known this long. Does she have any delays? Remember

that she is the same child she was before the diagnosis. That will never

change. Give yourself time to deal with this, cry your tears, we all have,

then it is time to move on. We are all here to listen and help in whatever

way we can.

Luanne

mom to Mahrya 3 1/2 mds, Ben almost 5, Alan 11, Sandy 13, Steve 15, Dan 17

At that point I cried and have continuted to cry for

>several weeks.I got the diagnosis on March 31,2000.

>I have been tring to research this and there is not much information

>on this condition. I have stumbled onto this site and hope that I can

>find some kind of help and information.

>If you can give any advice , comments or help , I would truly

>appreciate it.

>

>Sincerly,

>Kaydo386@...

>

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[Guest guest]

In a message dated 4/16/00 12:13:11 PM Eastern Daylight Time,

luannee@... writes:

<< At that point I cried and have continuted to cry for

>several weeks.I got the diagnosis on March 31,2000. >>

Hi , I kinda know how you feel , my dd wasn't diagnosised till she was three

and being that she already had a negative dx for down syndrome at birth I

didn't think she would have MDS.

When I got the dx, I went thru the same emotional feelings and mourning that

each new parent does ....... but the realization that even though Kaitee has

MDS, it has always been a part of her, and I didn't realize it, the only way

it was going to become dominating was if I started treating her differently,

Kaitee is still Kaitee, the same loveable , emotional, trouble, thrill

seeking little varmit that I have grown to love so deeply, the only

difference is that I understand a bit better the whys of her delays.....

why she has the hearing difficulties, why she has the sleep troubles, why her

speech is so delayed........ I have a better understanding of why Kaitee is

the way she is , but the MDS doesn't control our lifes.......... I have had

people say to me, when kaitee does certain things...... well that isn't the

trait of a downs syndrome child, and they probably receive much more

education on the subject then they wanted and wish they kept their mouths

shut....... our children are much more like typical children then

different.......They have a uniqueness that makes them different and gives

them their own personal touch.........once upon a time , down syndrome of any

form was a horrible horrible disease...... now it is looked upon differently,

and treated differently.... our children have as much chance and hope that

other children have, maybe many more hurdles to jump...... bumps in the road,

but are children are very much like anyone else. debbi mom to Kaitee 3

[Guest guest]

Welcome to our little corner of the WEB!! My name is Angel, and I have 4

children and 1 stepson that I raise, including my 7 year old son, , who

has MDS. is 50% mosaic. Your daughters diagnosis sounds very familiar

to many of us parents of children with MDS. My son has a bowel disease

that he had to have several surgeries for within his first 6 months of life,

tons of doctors and nurses and doctors appointments... no one noticed a

thing. When I was later pregnant again, I went to see a geneticist to see

what the chances of the bowel disease being passed on was, and didn't have a

babysitter, so I just happened to have with me that day. The geneticist

spent more time looking at him and asking about him than with me, and finally

asked if she could do his bloodwork because " he showed some characteristics

of some chromosome disorders " . Of course down syndrome was all i could think

of, and after the one of the longest 2 weeks of my life, the diagnosis was

Mosaic Downs. was almost a year and a half old, I was 21, and there

was even less information about Mosaic Downs 6 yrs ago than there is today.

I understand the pain of finding out your child isn't who you thought they

were... but the thing is.... they are. Your daughter is the exact same child

she was before her diagnosis. How is she doing? Doing well in school? Do

you have other children? We'd love to hear more about her and your family!!

is in 1st grade now. He's in a special ed classroom for the time being.

He's very active, gets along great with his siblings, and with his

classmates. He struggles most with his academics, mentally he's about 3 1/2,

so he's just starting to get the ABC's and numbers and colors, etc, and he's

starting to write his name, which at the time is a " J " and then an infinate

number of circles.... heehee..but to him it says !

My prayers are with you in you time of grief... grief is how i described the

pain I felt when was born ill... as if the healthy bouncing baby boy I

imagined for 9 months was taken from me and replaced with this sick child who

I couldn't take home and needed so much care. I had to grieve the loss of

what I'd imagined would be his life, and come to terms with what was really

going on. I can relate...and I promise, things get better... " this too shall

pass " .

Blessings!

Angel

Mom to 7 MDS

Tyler 8, 5, Jaeda 3