Re: New Expectant family- ?'s

[Guest guest]

Hi ,

I wanted to respond to your % of cells questions first as my son, Aiden, who

is 3 ½, has 96% of his blood cells affected with trisomy 21 (this was with a

blood cell sampling of 500). He is doing phenomenal! Besides an expressive

speech delay, he has had very, very few other issues. He was breastfeeding

at 20 minutes old, and was in the 95th percentile for height and weight on

the “normal” baby charts throughout his first 2 years. He hit all his

milestones as any baby, except a small walking delay (first steps at 14

months, fully walking at 17 months). He did not have heart problems,

eye-sight normal, not even one ear infection, which is not even the norm for

“normal” kids. He was potty trained by his 3rd B-Day and is already

sleeping thru the night without a pullup. Will he have problems in the

future? I don’t know! And that, is one of the hardest things for

me…..sounds like for you as well. My intention for this brag session J is

that the percentage of blood cells is clearly not the only factor or Aiden

would not be doing so well. There are too many cell lines, cells lines that

cannot be tested, thus percentages in those cells lines that are unknown.

As for optimists, I have always been an optimist, although you would never

have guessed, if you were to meet me this past three years. I have come

across parents that seem to be true saints and when I read their stories I

feel pessimistic and selfish. So the stories I share do not come from

optimism, they come only from truth and the truth is that not a day goes by

that I don’t wish Aiden did not have mds, AND not a day goes by that I don’t

thank God that he is our son and part of our lives! I don’t know if this

will ever change for me.

, your marriage is going to be as strong as each of you are as

individuals. You cannot predict what hardship throughout your lives

together may bring an end to your marriage, should it be this one or another

that may lie ahead for you. My husband and I had a strong relationship

before our son was born, I would not describe it as stronger now, but maybe

as more connected…it’s hard to describe. I feel closer to him, more love

and admiration of him for his commitment to our family and his genuine

support of me.

Lastly, I must say you sound a lot like me J. Very organized in your

thoughts, trying to cover all the bases, doing all the research, asking many

questions and feeling that answers must follow. But they won’t… not the

answers you are looking for right now. This has been one of the hardest

things for me to accept, and believe me, I’m still fighting it. Just a

quick analogy……we decided to forgo 2 immunizations for our son, Pertusis and

MMR, I did countless hours of research on both sides, talked to our

pediatrician and spoke with other mothers and fathers. Well, when our

decision was made to forgo them, I thought I’d feel good about that

decision, but I did not. I did not feel correct in getting them and I did

not feel correct in forgoing them, because there were NO clear cut answers.

Not in this situation and, I’m sorry to say, not in yours.

Aloha Nui Loa,

Mom to Aiden 3 ½ mds

[Guest guest]

>aloha karen, do you live in hawaii? or is it cal.? -kuulei

> Hi ,

>

>

>

> I wanted to respond to your % of cells questions first as my son,

Aiden, who

> is 3 ½, has 96% of his blood cells affected with trisomy 21 (this

was with a

> blood cell sampling of 500). He is doing phenomenal! Besides an

expressive

> speech delay, he has had very, very few other issues. He was

breastfeeding

> at 20 minutes old, and was in the 95th percentile for height and

weight on

> the " normal " baby charts throughout his first 2 years. He hit all

his

> milestones as any baby, except a small walking delay (first steps

at 14

> months, fully walking at 17 months). He did not have heart

problems,

> eye-sight normal, not even one ear infection, which is not even

the norm for

> " normal " kids. He was potty trained by his 3rd B-Day and is

already

> sleeping thru the night without a pullup. Will he have problems

in the

> future? I don't know! And that, is one of the hardest things for

> me…..sounds like for you as well. My intention for this brag

session J is

> that the percentage of blood cells is clearly not the only factor

or Aiden

> would not be doing so well. There are too many cell lines, cells

lines that

> cannot be tested, thus percentages in those cells lines that are

unknown.

>

>

>

> As for optimists, I have always been an optimist, although you

would never

> have guessed, if you were to meet me this past three years. I

have come

> across parents that seem to be true saints and when I read their

stories I

> feel pessimistic and selfish. So the stories I share do not come

from

> optimism, they come only from truth and the truth is that not a

day goes by

> that I don't wish Aiden did not have mds, AND not a day goes by

that I don't

> thank God that he is our son and part of our lives! I don't know

if this

> will ever change for me.

>

>

>

> , your marriage is going to be as strong as each of you are

as

> individuals. You cannot predict what hardship throughout your

lives

> together may bring an end to your marriage, should it be this one

or another

> that may lie ahead for you. My husband and I had a strong

relationship

> before our son was born, I would not describe it as stronger now,

but maybe

> as more connected…it's hard to describe. I feel closer to him,

more love

> and admiration of him for his commitment to our family and his

genuine

> support of me.

>

>

>

> Lastly, I must say you sound a lot like me J. Very organized in

your

> thoughts, trying to cover all the bases, doing all the research,

asking many

> questions and feeling that answers must follow. But they won't…

not the

> answers you are looking for right now. This has been one of the

hardest

> things for me to accept, and believe me, I'm still fighting it.

Just a

> quick analogy……we decided to forgo 2 immunizations for our son,

Pertusis and

> MMR, I did countless hours of research on both sides, talked to our

> pediatrician and spoke with other mothers and fathers. Well, when

our

> decision was made to forgo them, I thought I'd feel good about that

> decision, but I did not. I did not feel correct in getting them

and I did

> not feel correct in forgoing them, because there were NO clear cut

answers.

> Not in this situation and, I'm sorry to say, not in yours.

>

>

>

> Aloha Nui Loa,

>

> Mom to Aiden 3 ½ mds

>

>

>

>