Re: - Born June 18th, 2007 - Just brought him home

June 24, 2007

, congratulation on the birth of your precious baby boy. I love

seeing that transformation from fear to love. I wish more people could

know it.

As far as physical features, my experience with Ciarra has been a lot

like yours. She has long limbs, long fingers, a delicate and long neck,

her ears are set in the usual place, no simian creases. She has great

tone, speaks quite well, and keeps up extremely well with her classmates

academically, socially, and physically. She has the beautifully shaped

eyes, and incredibly prominent Brushfields spots. She also has the

sandal toe, which is so cute, in our opinion. I have gone back and forth

in wondering if she had Mosaic DS. Most of her Doctors have suggested we

test her for it, and more than a few parents have asked if she did too.

I even joined the MDS site to just read and see what the big difference

was. From what I discovered, there really isn't much. Many people with

diagnosed MDS actually have a harder time with certain areas than Ciarra

does. Some kids with reg old T21 have an easier time. It really seems to

me that it is the luck of the draw, plus the acceptance and willingness

to work of the family. ANY child that is born into a family that doesn't

take time to teach them will struggle, and any child born to a family

who adores them as you do will thrive. Of course, medical

issues can complicate DS, we have been so lucky there. Really, it is a

big combination of things that make variability in DS happen. '

best chance to be everything he can be started the day you fell in love

with him. in Maine, Mom to Ciarra, who will be 9 on Wed.

(CRAZY!)

- Born June 18th, 2007 - Just brought him

home

Hello to everyone - - I haven't posted here yet - but have been

watching, reading since about January when I found out the baby I was

carrying would (does) have Trisomy 21 (confirmed via Amnio)

we were absolutely devastated and it took quite a while before I could

bring up the courage to really start reading about it and really

reading everyone's stories (both good and bad)

I want to thank everyone here for all their personal story sharing as

it has been a tremendous help to me to know there are such great

support groups out there and that I " m not alone --

we feel so blessed to have with us now - - *we came home

Friday* - and are truly kicking ourselves in the rear end for even

THINKING we had a 'choice' to not bring him into this world, as the

doctors constantly reminded us. It makes me cry to even think I could

have thought that.

But anyway - - I do now have a couple questions as we have been

watching our new son for a few days - - -

the nurses all said he has the 'markers' - so I asked one out of

curiousity what she was seeing as his markers -

she said definately his eyes - which I do agree - they are a bit

almond and closer set - - but she said except for the simian crease

that was about it - - the crease though is ONLY on his left hand!

Is this an oddity?

so far we can't see any other external markers - -

will others become more pronounced as he is growing?

Is there any reason to believe that with the fewer markers, that

possibly he may have mosaic?

we will be doing his genetic testing shortly as well as get him going

with getting an assigned EI counselor -

again I want to thank you all for your sharing as it has helped me

prepare so much better than reading text books.

Kindly

Dekom

Long Island , NY

julz_5 (DOT) <mailto:julz_5%40> com

June 24, 2007

,

Congrats, little boys are great, ds or not. As for the MDS, you mentioned

you had amino already. I believe, or at least they did when I had my amino

they look at like 15 cells or something, this is how they would know if he had

classic trisomy 21 at all. I thought that with MDS that it would only be in

some of the cells but not all since it does not begin in the first

cell...someone correct me if this isn't the case. As far as the markers go,

from what

I have read they will say that only 40% have this or 40% have that as with

the simian crease, toe, heart etc. Generally the eyes seem to be what catches

my attention. My son is 13 and so far he is normal for his height etc where

alot of the kids seem to be short in stature.

************************************** See what's free at http://www.aol.com.

June 24, 2007

Isn't it sorta funyt too, that we, as parents don't " see " it, but others know

it...lol My mom feels the need to tell people that Myah has DS, and people will

say, I know. She laughs about it all the time because she just doesn't see it.

We have to remember that even though our kids have DS and may have certain

characteristics, they still look like their parents. Everyone says how much Myah

looks like me when I was a child. When Myah was a baby a lot of people didn't

know and I think that was mainly because in my small town there aren't a lot of

people with DS and people just didn't have the exposure. Regardless of who

knows, who doesn't, and so on, she's a little cutie and we love her. You feel

the same, I'm sure.

, mom to Myah 6.5 DS, Shianne 2, and baby due in 33 days!

Re: - Born June 18th, 2007 - Just brought him

home

,

Congrats, little boys are great, ds or not. As for the MDS, you mentioned

you had amino already. I believe, or at least they did when I had my amino

they look at like 15 cells or something, this is how they would know if he had

classic trisomy 21 at all. I thought that with MDS that it would only be in

some of the cells but not all since it does not begin in the first

cell...someone correct me if this isn't the case. As far as the markers go,

from what

I have read they will say that only 40% have this or 40% have that as with

the simian crease, toe, heart etc. Generally the eyes seem to be what catches

my attention. My son is 13 and so far he is normal for his height etc where

alot of the kids seem to be short in stature.

************************************** See what's free at http://www.aol.com.

June 24, 2007

I was thinking the same thing. I never thought looked like a

DS child at all when he was little. He was just himself. But a few years

later when we looked at pictures, I could hardly believe that was him!!! We

look with eyes of love and it doesn't matter. At the same time I can see a

person with DS walking down a hall ahead of me, or something similar, and I can

see it right away. I couldn't tell you how though. You are probably the same.

I also remember one day when he was in preschool, parents were lined

up waiting for all the kids to come out, and I thought how lucky I was.. The

others were just waiting for regular kids but I was getting RUSSELL. At that

time he was the only child in school with DS. I have always felt SO lucky to

have him. Still do. Jessie

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

See what's

free at http://www.aol.com.

June 25, 2007

hey I'm going to be in suffolk county in the summer. My friend lives in

Selden. Other friend lives in Massapequa.

Love

Allyson

June 25, 2007

Wow, I just approved your pictures and was tickled to see a 3D

ultrasound picture included. I love seeing those! It's amazing what

technology is available today. Take lots of pictures because he's

going to grow up so fast!

>

> Hello to everyone - - I haven't posted here yet - but have been

> watching, reading since about January when I found out the baby I

was

> carrying would (does) have Trisomy 21 (confirmed via Amnio)

> we were absolutely devastated and it took quite a while before I

could

> bring up the courage to really start reading about it and really

> reading everyone's stories (both good and bad)

> I want to thank everyone here for all their personal story sharing

as

> it has been a tremendous help to me to know there are such great

> support groups out there and that I " m not alone --

>

> we feel so blessed to have with us now - - *we came home

> Friday* - and are truly kicking ourselves in the rear end for even

> THINKING we had a 'choice' to not bring him into this world, as the

> doctors constantly reminded us. It makes me cry to even think I

could

> have thought that.

>

> But anyway - - I do now have a couple questions as we have been

> watching our new son for a few days - - -

> the nurses all said he has the 'markers' - so I asked one out of

> curiousity what she was seeing as his markers -

> she said definately his eyes - which I do agree - they are a bit

> almond and closer set - - but she said except for the simian crease

> that was about it - - the crease though is ONLY on his left hand!

> Is this an oddity?

>

> so far we can't see any other external markers - -

> will others become more pronounced as he is growing?

>

> Is there any reason to believe that with the fewer markers, that

> possibly he may have mosaic?

>

> we will be doing his genetic testing shortly as well as get him

going

> with getting an assigned EI counselor -

>

> again I want to thank you all for your sharing as it has helped me

> prepare so much better than reading text books.

>

> Kindly

> Dekom

> Long Island , NY

> julz_5@...

>

June 26, 2007

Congrats on your new baby boy.... enjoy these cuddly moments as he will

grow up so fast!

Whomever read the amnio cells would have counted more than one cell to

confirm 100% T21 (or would have suggested mosaic), so if they told just

plain 'ol Trisomy 21, it's probably just that. In any case, there isn't

as much " predictability " as one might think.... I know once I found out

about mosiac I hoped that had that becuase I thought it meant

she would be " less affected " , but from what I've learned, this isn't

necessarily true. (She has the most common, Trisomy 21, Down's Syndrome).

As for " markers " , as a parent, I see them more in photographs than in

real life. I didn't notice so many " Down's-like " characteristics when

was a baby (and still don't, LOL), but when I look at baby

pictures, I see things I never noticed when I held my beautiful baby.

She has one palm with the crease, but not the other, and the same with

her feet (whatever the marker was, it was only on one foot).

Interestingly, when we were at the pediatrician's office at about 1

month old, and the ped mentioned the single crease, my DH kept looking

at his hand and saying " I don't see the difference " . Well, upon

examining HIS hand, we found he also has a single crease (which happens

in about 2% of the genetically normal population)... it explained why he

didn't see the crease marker! I thought he was just in denial!!!

is 9 1/2, and doing very well. She's fully included in 3rd

(oops, we're on to 4th) grade, speaks clearly, reads well, does math at

about a mid-2nd grade level, and is a real comic that keeps us

smiling. She's sweet and kind, but watch out if you are breaking a

rule.... she's brutal on rule-breakers (especially when it's her little

sister, LOL) She's in Girl Scouts and goes to Sunday school with her

peers. She's a computer wizzard, and somehow has managed to go around

my security software to continue downloading trial versions of games

from nickjr.com... I think it's just persistance, since I doubt she can

hack the software, but it's pretty funny in any case. She asked for my

credit card the other day (you only get 15 minutes trial game, and then

you need to pay to continue), so I need to keep THOSE locked up!

We frequently get " Oh, she must have mild DS " or " Oh, just has a little "

from people. In the beginning, I tried to educate people and tell them

that people with DS had a range of skills and abilities, just like the

typical population, etc. etc. etc., and there was no " partial "

(choosing NOT to go into mosiacism in a casual conversation), how early

intervention had improved the lives of people with DS, etc. etc. and

that she DID have DS.... it was like, they wanted us to feel better that

she " didn't have it so bad " , but it was slightly irritating. Now I look

at it more as a complement to 's abilities, but it's amazing

how much of the general public believes you can get " a little " DS.

Enjoy your journey with ... delight in the milestones he

reaches near his typical peers, and realize that the ones he's a bit

late on.... he will get there, just on his own time. It's hard when

" What to Expect The First Year " is still sitting around at 18 months :-)

but know that for most of his life, there won't be a " scorecard " of

developmental milestones like there seems to be for babies! Watching

run her race in the 2nd/3rd grade Field Day, it was hard to

believe we waited so long for her to walk! She finished last in her

heat, but enjoyed the success in finishing the race, and several friends

commented how great her running form was (and it's getting pretty good,

if I do say so myself!) I was also able to watch her 2nd grade sister

win her race, ending up to be the fastest 2nd grade girl, and that was

thrilling too, which in the early years, I wondered if I could enjoy

Sammy's successes, knowing that she would at some point " pass up " her

big sister. It's happening more and more, and yet I notice it less and

less... they are such individuals, there is no comparison!

Anyway, enough rambling for tonight. Welcome, and contrats again on

your precious baby boy.

, mom to (11), (9 DS), and Sammy (7)

julz_5 wrote: