Re: pregnancy

[Guest guest]

Hi All,

I felt guilty about what I may or may not have done during my pregnancy w/

Destiny. One day while I was wallowing in my guilt a mom of a Down's child

told me what her Dr told her--WE DID NOTHING WRONG! In fact, because we did

everything right we were able to bring our babies into this world instead of

miscarrying. Many miscarriages are because of severe defects to the fetus (so

I've been told). Try to stop blaming yourself for what you may or may not have

done wrong, but congratulate yourself for what you definitely did right!

Take Care,

(Destiny 6 CHARgE, Zachary 4 soon)

NYC

[Guest guest]

,

Hi, Am I right if I say your second child is normal ?

Because I am pregnant now with my second, I am so scared.

Please answer me, to give me hope.

JANA LOUW (mom to Charge angel Kayla, 15 mo)

Re: pregnancy

From: LJoyC@...

Hi All,

I felt guilty about what I may or may not have done during my pregnancy

w/

Destiny. One day while I was wallowing in my guilt a mom of a Down's

child

told me what her Dr told her--WE DID NOTHING WRONG! In fact, because we

did

everything right we were able to bring our babies into this world

instead of

miscarrying. Many miscarriages are because of severe defects to the

fetus (so

I've been told). Try to stop blaming yourself for what you may or may

not have

done wrong, but congratulate yourself for what you definitely did right!

Take Care,

(Destiny 6 CHARgE, Zachary 4 soon)

NYC

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[Guest guest]

In a message dated 99-03-23 09:11:13 EST, you write:

<< We have had 2 ultrasounds done and

both show everything to be fine. The second ultrasound was called a level 2

or targeted ultrasound. We have been told that our chances of having another

>>

Jodie,

Not to scare you, but I had the same ultrasounds with Jillian... I had 2 with

also and there wasn't a part of his body that did function..I was so

scared after jacob that my doc let me hear her heartbeat at 9 weeks by

reaching upp unside me and pushing my uterus to the top so we could hear it.

They did all the fine tuned tests to reassure me, so when she was born, I

freaked!!!!

Foley

[Guest guest]

Jana,

YES, my second child is normal. Zachary will be 4 next week and is your

typical kid. The only thing is that he is as smart as a whip! He knows many of

his internal organs and we are now working on what they do. Last fall he

announced he wants to be a doctor when he grows up and if that is what he

REALLY wants to do I will move heaven and earth to make sure he can achieve

it. Remember the reoccurrence risk is still VERY low. We have a couple of

families on the list w/ more than one Charger, but that is rare. The odds are

in your favor that the baby will be just fine. There are many other families

on the list who have gone on to have normal kids after their Charge child was

born and chances you will also. It's hard to relax, I know. I was paranoid the

whole time I was pregnant w/ Zachary. I think I drove those doctors nuts. They

may have been more relieved to see Zachary born healthy than I was!

Also, on a sibling note, I am beginning to see Zachary take care of Destiny a

little bit. A few weeks ago he learned how to zip his jacket then last week he

insisted that he would do Destiny's also. It was so sweet to watch them

together. Not that they don't have their fights--they have some doozies--but I

can see the love they share. It was always my hope that once we are gone from

this earth Destiny would have someone in the world who would care about her

interests. I saw that hope fading as they would fight all the time. Now I see

that he loves and cares for his big sister very much. Even when they are

running around the house he will get way ahead of her then slow down (almost

running in place) so she can catch up and " tag " him. Then when it is his turn

to chase her he will run real slow so she can have fun w/ the chase then speed

up to tag her. He has a real sensitive soul and a special spot for his

" friend " and sister Destiny.

(Destiny 6 CHARgE, Zachary 4 next week)

NYC

[Guest guest]

I have a 10yr. old with CHARGE and only had 1 sono. that of course appeared to

be ok. With my second i had a level2 and a heart echo because they suspected a

heart defect. The level 2 also showed the heart defect so the dr.s were

assuming he was going to be a downs baby and wanted me to go farther for

testing and seek genetic counseling. That was it for tests for me and said I

would accept whatever God gave me and my son was born perfectly normal. My

third who is only 10 months old i had a level 2 also and they did from head to

toe and he is perfect also. I also did retain alot of fluid only with my

daughter who was born with CHARGE and had high blood pressure. Anyone out

there deciding whether or not to have more, go for it the chances are slim to

none of this ever happening again.

Tia K.mom of 10 yr. old with CHARGE

[Guest guest]

In a message dated 99-03-24 09:10:00 EST, you write:

<< - did you have a normal pregnancy with Jillian? Did you have too

much fluid? Did you have normal movement? Did you have the fetal echo?

If so, I guess it was normal, right? >>

My pregnancy with Jillian was completely normal. No extra fluid ( with I

always had tons of extra fluis) The fluios is becauase babies swallow and

recycle the amniotic fluis. could not swallow, not to mntion, it would

have gotten nowhere because his stomach was not attached to his intestines...

therefore excess fluid..... Jillian swallows so no excess fluid...... Jillian

did not move as much, but we thought it was a girl thing, come to find out

it's a hypotonic thing......I had fetal echo, the doc even measured her eye

sockets to make sure they were the same size because 's one eye was 1/2

the size of the other...... After all these tests and she still came out

CHARGE, you can see why I was a mess!!!!!! I really want another baby, but I'd

be a complete fool to think I could chance it. That SUCKS !!!

Foley

[Guest guest]

In a message dated 99-03-24 10:11:13 EST, you write:

<< mine was probably the

equivalent of your " normal " water breaking about 4-5 times} they look >>

, with , my doctor DID break my water 4 or 5 times and could not

figure out what the heck was going on. Finally the last time, it gushed. It

was a waterfall in that room!!!

Foley

[Guest guest]

Debbie,

I'm not , but I wanted to jump in here. I had a LOT of fluid

throughout the pregnancy and, like you, I measured further along than I

was throughout. A nurse in the delivery room later told me that when

there is a lot of fluid with a delivery, {mine was probably the

equivalent of your " normal " water breaking about 4-5 times} they look

for problems, especially in the oral area {clefts, nose, mouth, etc

problems}. My question is this: {not that it'd have made a hill of

beans of differnce though} My doc said all through that " You are either

having a really LARGE baby, or you've got a LOT of fluid " . I would

think this should have triggered some kind of warning bells? Am I nuts

here? Just my uninvited .02 cents!!!

Mom to Kennedy 13 mos old CHARGEr, 9, 7 and wife to Graeme

New Brunswick, Canada

> - did you have a normal pregnancy with Jillian? Did you have too

> much fluid? Did you have normal movement? Did you have the fetal echo?

> If so, I guess it was normal, right?

>

>

> Debbie Matasker mom to 22 mths, 4

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

*ICQ* UIN:1426476

*AOL Buddy* - Kawfolks

[Guest guest]

,

I had polyhydramanious with all my kids. with Dawn I

didn't know better.. heck we figured I's have a huge kiddo

with having a 56 inch waist two days before delivery, she

was a bit over 6 pounds. With Ken they did extra

ultrasounds looking for stuff because of the extra

amniotic fluid ( too bad onery doesn't show up in an

ultrasound <G>) Found nothing.. I had so much amniotic

fluid with that I was in maternity clothes at 8

weeks, At 10 weeks I had so much fluid that for the

ultrsound they did then they actually made me go to the

bathroom because they had no problem seeing the

uterus with an empty bladder. When at 22 weeks they

found the cleft they said " Well that explains the fluid "

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE.

Cobb California

ICQ UIN# 728514

AIM Buddy List: ZeeCasey

[Guest guest]

In response to the fluid question, I don't know if I had alot of fluid, but I

do remember the Dr. breaking my water and it really squirting out fast and it

startled him as if it was something abnormal??? I don't know, just something i

have always wondered about, anybody else have that??

mom to Caitlin

[Guest guest]

, I really want to go to the conference and I would be coming with only

my daughter so maybe we could share a room.I am trying to find out if I can go

or not I should know in a couple of days! Let me know if you don't have a

roommate already when you get this....

[Guest guest]

Casey,

That's pretty interesting...they didn't need my bladder full either at

my 18week ultrasound. They actually gave me a cup and said " Can you

please pee just a little bit? " Can you imagine letting SOME out and not

all...the nerve. Anyway, I ended up emptying the whole thing and they

still saw everything okay.

--

Mom to Kennedy 13 mos old CHARGEr, 9, 7 and wife to Graeme

New Brunswick, Canada

>

>

> ,

>

> I had polyhydramanious with all my kids. with Dawn I

> didn't know better.. heck we figured I's have a huge kiddo

> with having a 56 inch waist two days before delivery, she

> was a bit over 6 pounds. With Ken they did extra

> ultrasounds looking for stuff because of the extra

> amniotic fluid ( too bad onery doesn't show up in an

> ultrasound <G>) Found nothing.. I had so much amniotic

> fluid with that I was in maternity clothes at 8

> weeks, At 10 weeks I had so much fluid that for the

> ultrsound they did then they actually made me go to the

> bathroom because they had no problem seeing the

> uterus with an empty bladder. When at 22 weeks they

> found the cleft they said " Well that explains the fluid "

>

> Casey

> charge@...

> minnow@...

>

> Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE.

> Cobb California

> ICQ UIN# 728514

> AIM Buddy List: ZeeCasey

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

*ICQ* UIN:1426476

*AOL Buddy* - Kawfolks

[Guest guest]

In a message dated 99-03-24 16:11:50 EST, you write:

<< , I really want to go to the conference and I would be coming with

only

my daughter so maybe we could share a room.I am trying to find out if I can

go

or not I should know in a couple of days! Let me know if you don't have a

roommate already when you get this.... >>

,

I am waiting for the first person ( mom that is) that is willing to share a

room. I have 2 others that are possibilities, but am just waiting for anyone

to confirm!!

Foley

[Guest guest]

JFoley6163@... wrote:

>

> From: JFoley6163@...

>

> In a message dated 99-03-23 09:11:13 EST, you write:

>

> << We have had 2 ultrasounds done and

> both show everything to be fine. The second ultrasound was called a level 2

> or targeted ultrasound. We have been told that our chances of having another

> >>

> Jodie,

>

> Not to scare you, but I had the same ultrasounds with Jillian... I had 2 with

> also and there wasn't a part of his body that did function..I was so

> scared after jacob that my doc let me hear her heartbeat at 9 weeks by

> reaching upp unside me and pushing my uterus to the top so we could hear it.

> They did all the fine tuned tests to reassure me, so when she was born, I

> freaked!!!!

>

> Foley

>

Not to scare any of the other pregnant troopers out there further, as I

am one of them, but with , I had so much fluid, was showing

bigger than my due date all along, had the regular 2 ultrasounds at the

beginning, one at 9 weeks, the other at 20 weeks, and they missed 2 very

deformed hands! A pretty basic thing. I think the way you feel

physically, also, is an indication of how the pregnancy is going. I am

just comparing this one, to and , and it feels much like

(minus the fact I am way more stretched due to what did

to me). Also the fetal activity, I couldn't feel much, duh, he

was floating in fluid. I have been neurotic about my fluid level and

seeing 10 fingers and 10 toes. Even though the ultrasounds aren't full

proof that everything is okay, if they are 2nd and 3rd level detailed

ones they can see pretty much everything (except choanal atresia which

makes me nervous). My opinion on ultrasounds that as long as they are

looking for problems they will either find them or there will be none

(minus subtle heart defects and ear and eye problems, although they can

see down to cataracts now, and they can look at ears on 3-d). In my

case with , I was treated as a complaining pregnant woman and was

very very neglected for what the doctors did to me.

- did you have a normal pregnancy with Jillian? Did you have too

much fluid? Did you have normal movement? Did you have the fetal echo?

If so, I guess it was normal, right?

Debbie Matasker mom to 22 mths, 4

[Guest guest]

With KK somewhere around 8 months along, I started to measure really big.

My doc only told me one thing... You are going to have a big baby. I

was solid! He said the baby would be about 10 lbs., which would of meant

I needed a C-Section anyways, since my body frame(which is the only

thing) is small. But when she came out, she was only 5lbs 10oz! And the

ultrasound they did hours before delivery showed hardly any fluid left,

and he measured me that morning before I went to the hospital, and still

said it would be a big baby. None of that has ever made sense to me, but

since the subject came up of over measureing, thought I'd through my

experiecne in too. :0)

Korey mom to KK

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[Guest guest]

JFoley6163@... wrote:

>

> From: JFoley6163@...

>

> In a message dated 99-03-24 09:10:00 EST, you write:

>

> << - did you have a normal pregnancy with Jillian? Did you have too

> much fluid? Did you have normal movement? Did you have the fetal echo?

> If so, I guess it was normal, right? >>

>

>

> My pregnancy with Jillian was completely normal. No extra fluid ( with I

> always had tons of extra fluis) The fluios is becauase babies swallow and

> recycle the amniotic fluis. could not swallow, not to mntion, it would

> have gotten nowhere because his stomach was not attached to his intestines...

> therefore excess fluid..... Jillian swallows so no excess fluid...... Jillian

> did not move as much, but we thought it was a girl thing, come to find out

> it's a hypotonic thing......I had fetal echo, the doc even measured her eye

> sockets to make sure they were the same size because 's one eye was 1/2

> the size of the other...... After all these tests and she still came out

> CHARGE, you can see why I was a mess!!!!!! I really want another baby, but I'd

> be a complete fool to think I could chance it. That SUCKS !!!

>

> Foley

>

>

,

Of course I can completely understand why you would be a mess. But, on

the bright side, Jillian is doing so well and has such minor (in my

eyes) problems, that she is going to do great.

To everyone with lots of fluid:

I am so glad I am not alone with had having this problem and being

ignored!!! We should have all bene red flags. It just is not the

" norm " to have polyhydramnios!!

Debbie Matasker mom to 22 mths, 4

[Guest guest]

Hi All,

I had a very normal pregnancy with both my children. I only put on 1 1/2

stones with both and had a very neat bump.There was no excess fluid with

either. I had scans at 16, 20,32 & 40wks with Jack and none of these scans

showed any problems. The scan at 20 wks was a detailed scan (level 2) and it

did not detect any of Jack's heart defects which I find quite hard to believe.

The sonographer also said " this baby is most definitely a boy " and showed me

where his penis was. I must admit at the time I couldn't really make it out

and just said " oh, yes so it is " !!!. I was quite surprised when he was born

and saw the size of his penis. It was tiny ,no wonder I couldn't see it!

Jack was not very active in the womb although I didn't worry too much as I

could feel him moving around. My daughter was very active and kicked all the

time. I put Jack's inactivity down to the fact that my womb had been stretched

by Elise and that she is and always has been a very active child. She never

sits still for a minute!!!

Apart from that I was the picture of health and had no problems.

Elaine mum to Elise(6yrs) & Jack(20mths) CHaRGE

Dumfries,Scotland

[Guest guest]

,

I totally agree with you. I think KK deserve my full attention. I know

she needs a brother or sister...to push around. But I just don't think

I could split my time...even if the child was normal. That wouldn't be

fair to either one of them. I'm happy for those of you how know you can.

~at least you have 2 before her. They sound so wonderful too. I

just can't get over how they help you. At first it was like pulling

teeth to get hubby to help with the feedings. Especially when she was

due and we were in public or at his parents house. . . .God forbid his

child need something like that in public or in front of his family to

seeeee and acknowledge problems within the family!! Don't get me

started.. But I agree with you. Sorry for showing my bad side ..again..

Korey mom to KK

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[Guest guest]

, if you really want more children have you ever considered adopting?

nne is my oldest with CHARGE - with all of her medical issues we were

dealing with we adopted 2 children. They were considered special needs kids

- we were told they had developmental delays, speech problems etc. I said

they would fit right in. Well, they are 2 of the healthiest children I

have ever seen and my daughter is a Straight A student (now 10) and her

sibling gets A's and B's (if he wanted he could get A's too. They were 2 1/2

and 4 when they came to live with us.

They were so happy to have a home and be loved. There are so many kids who

are older who need homes and nobody wants them because they are not infants.

Well, I couldn't love them anymore if they were in my womb. We were

blessed beyond words and they love there Sister very much. It's funny

because people will tell me that my 2 adopted kids look like me!!! My 10

yr. old signs very well, my son is getting better. When he was 2 he thought

you could move your hands any whick way and it would mean something. Now he

knows better and is tryinng harder!!!

Sometimes the girls and myself will only use sign to show him how left out a

person can feel. Than he gets frustrated really fast and understands how it

is for nne.

I wish you luck with whatever you decide. I've been reading alot lately

about everyone wanting more children and being afraid to take the chance.

Celeste - nne 15 CHARGE, Sharon 10, 9

[Guest guest]

,

I get frustrated as well sometimes, but I feel more for Graeme as he has

never experienced a " healthy " baby situation and sadly, now, he won't

get to, either. I've had two children from a previous marriage, so I

know what it's all about, but he doesn't. As for the walking, well,

Kennedy will be 14 months old on Saturday and can't even sit up yet.

Walking is like a distant galaxy to me. But, she's close, and I've just

got to remember that she'll do it when she's ready.

Mom to Kennedy 13 mos old CHARGEr, 9, 7 and wife to Graeme

New Brunswick, Canada

> that she can't

> even crawl or walk to me if she wants me. She just has to fuss until I figure

> it out. I'm sorry, but it really SUCKS!!!!!

>

> Foley

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

*ICQ* UIN:1426476

*AOL Buddy* - Kawfolks

[Guest guest]

Korey,

Don't give it a thought, we all have our little " things " that get our

goats, I know I sure do, and by gosh, if I couldn't let loose on this

list, I think I'd be admitted to a psych ward somewhere by now! I

don't know what kind of genetic research has been done for Kabuki

syndrome, it may be genetically identified, so maybe you'd know what

your chances are of having another affected child. Maybe someday, eh?

Mom to Kennedy 13 mos old CHARGEr, 9, 7 and wife to Graeme

New Brunswick, Canada

> But I agree with you. Sorry for showing my bad side ..again..

>

> Korey mom to KK

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

*ICQ* UIN:1426476

*AOL Buddy* - Kawfolks

[Guest guest]

JFoley6163@... wrote:

>

> From: JFoley6163@...

>

> In a message dated 99-03-24 17:07:17 EST, you write:

>

> << I am so glad I am not alone with had having this problem and being

> ignored!!! We should have all bene red flags. It just is not the

> " norm " to have polyhydramnios!! >>

> Debbie,

>

> I am not sure what they measure in, but whatever it is....Normal fluid level

> is 18 .... I had 21 with .... They said " red flag " would have been

> 24.... So my " flag " was " yellow "

>

> Foley

>

> ------------------------------------------------------------------------

,

In my case they ended up draining 3300 cc of fluid from me by 34 weeks.

I, was definitely in the " red " .

Debbie Matasker

[Guest guest]

Marilyn Ogan wrote:

>

>

>

> Debbie Matasker wrote:

> >To everyone with lots of fluid:

> >I am so glad I am not alone with had having this problem and being

> >ignored!!! We should have all bene red flags. It just is not the

> > " norm " to have polyhydramnios!!

> >

>

> Debbie:

> I showed excess fluid at one of the last outpatient ultrasounds I had one

> week before I was admitted for " leaking " . The OB/GYN's office was going to

> call me and have a higher level ultrasound done, but I called them first

> with the news I was leaking!

> I had several ultrasounds performed the 5 days I was in the hospital before

> was born, and they never saw anything out of the ordinary, other

> than the excess fluid. did not swallow, so the fluid was not the

> big deal. For her, the problem was that she only had an 8-inch umbilical

> cord and got " pulled up short " during the first part of delivery.

> Fortunately, she was not actually in the birth canal and the c-section went

> well. BUT, not a single ultrasound (I had them 3 a day for 5 days!) showed

> the short umbilicus. Wish I knew what level ultrasounds they did. also did

> not see the choanal atresia or heart defect (large ASD).

>

> Anyway, that's the info about ultrasounds for us!

>

> Friends in CHARGE,

> Marilyn Ogan

> Mom of , 6 CHARGE and Ken, 9

> oganm@...

>

>

Marilyn,

I guess it depends on what set of problems each child has to determine

what can and can't be seen on ultrasound. Clearly, limb deformities and

cleft lips and palates can be seen, as well as brain abnormalties.

Heart defects can be seen on the fetal echo, which they also saw

's right aortic arch and thought he might have had a coarctation

of the aorta, which he did not. All the cardiologist knew was that

there was something very odd about his heart. It was so late in the

pregnancy and he was so big that she had a hard time diagnosing until he

was born.

What I learned about the fluid is, as my doctor said, 50% of the time it

is because the baby isn't swallowing due to either a TEF or Central

Nervous System Disorder or other birth defects ('s has severe

swallowing problems and his is mainly neurological as well as partly

physical), and 50% of the time the fluid goes unexplained and the baby

is fine. In all my books and listening to my doctor now, it says the

fluid is key to premature ruptured membranes (which I had but made it to

37 weeks because they kept draining me), and an indication that there is

something wrong with the baby.

Debbie Matasker

[Guest guest]

Hi All,

I was one of the rare ones that had little fluid during Destiny's pregnancy.

After she was born I read that Chargers are often born w/ extra fluid due to

the swallowing problems and choanal atresia. We were just a fluke, I suppose.

They actually had to induce my labor because I ran out of fluid. Also, it was

1 day before my due date. Unlike Debbie, I felt GREAT during pregnancy (except

for the usual vaginal problems). Destiny was quite a kicker. 1 week before she

was born I remember tipping my Lay-Z-Boy chair WAY back and putting my arms

over my head just to give her more room to move! She was born a week later

" sunny side up " (face looking at the ceiling). I think I felt her move so much

because her legs and arms were kicking the front of my uterus so much. Zachary

was born w/ the normal amount of fluid 9 days late. I went for ultrasounds

every other day for the last 2 weeks of pregnancy because I was so worried the

fluid would disappear like it did for Destiny. Also, throughout the pregnancy

I felt him move less. I think it was because he was born " sunny side down " or

facing the floor. He was probably kicking the back of my uterus and I couldn't

feel it as much. He was also a much bigger baby (9 lbs, 21in compared to

Destiny's 7lbs 2 oz, 19 in) so he may have been curled up more w/ less room to

move. My belly measurements w/ Destiny were always a little low by a cm or

two. W/ Zachary they were always a little high--at one point measuring 42cm

from the top to the bottom of my belly (40cm is normal at term).

Anyway, what I am trying to say is that every pregnancy is different. Even a

normal child can have large numbers and still be fine. Try to relax everybody

and enjoy this time. The late Erma Bombeck said that in retrospect she would

have enjoyed her pregnancies more because they are the only times in her life

she truly worked w/ God to produce miracles.

Good Luck to All!

(Destiny 6 CHARgE, Zachary 4 on Mon.)

NYC

[Guest guest]

I have to throw my $.03 in on this subject as I'm a big advocate for adoption.

I have 5 children and 3 of them are adopted. Our first adoption was in 1987

(BJ) when she was 18 mos. old and who is now 12 years old (she was a drug and

alcohol baby). Then our second was Tryny in 1994 when he was 3 mos. old and

who is now 5 years old (he is our CHARGEr). Our third was last September

1998 (Niki) when she was 18 years old and pregnant. Niki came from a very

abusive home life. And we now have a beautiful grandson from Niki. (I also

have a 20 year old " biological " daughter who has a baby girl that we legally

adopted to protect her from the biological father).

I firmly believe that " all " children deserve love, security and a stable home.

It takes a lot of LOVE, DEVOTION AND PATIENCE to " reprogram " a child to

believe that they

really are worth loving, but it's worth every ounce of work it entails. You

see, when children are abused or neglected, they start believing that they are

the cause, that they must not be worth loving. No child should have to live

this way. They all must feel loved, no matter the cost to us the adults.

If you have the chance to make a difference in any childs life, no matter what

the age of that child, it will be worth it (not only to the child but to you

as well). I'm not saying that the road won't be hard or filled with sorrow at

times (it will because you are having to undo the damage that was done to

them), but to know that you have made the miraculous difference in that childs

life, made their world a more beautiful place and tought them that they are

loved, is worth all the hard work it takes.

Sorry to go on and on but adoption of " special needs children " is a very

important to me and I tend to be somewhat forcefull when discussing the

subject.

Debra