Anyone ever been in this situation???

[Guest guest]

Oh, how I love what you both wrote. Lynnie, you are the head of this list,

right? Do you keep copys somehow of all the posts? I can't figure out what

to do with them. I have a couple of hundred on each of 2 computers and feel

so worried wiping them out in case I need to refer to something. Somehow

these need cataloging for referance. Anyone do anything special with their

posts or have the same problem I do with wiping them all off? S.

Re: Anyone ever been in this situation???

>From: GOLYNIE@...

>

>In a message dated 99-05-11 04:44:11 EDT, you write:

>

><< So we just prepared for whatever god had

> in store for us and the baby that was coming to join our family. I know

now

> that the decision we made was the only one we could have. So anyway, I do

> know how you feel right now. You have to do whats in your heart. Our

>little

> Josh has brought us so much. He is such an inspiration to anyone who

meets

> him. He is a little charmer, and touches everyone in own way. I just

love

> my little Josh to pieces. I can't ever imagine never having had him. He

has

> changed our live so much, (but for the better). So we just take a day at

a

> time and just spoil him rotten, and pour all the love we have into him.

>Good

> luck with everything, and stick to your guns with those doctors.

> , Momma to Josh (10) undiagnosed, asthma, seizure disorder, >>

>

>dearest :

>

>Yours is such a great responce. Keeping a child is so much harder than

>disposing of it. The blessings outweigh the pain by a mile. We all learn

>from your child and all children, special-needs or not, so anyone who says

>that there isn't value there has limited vision. We must live in a world

>frought with quick-fix methods. As a race we can be self-serving and

narrow.

> Only when we slow down and really become vunerable enough to see past the

>ends of our own noses do we learn and experence the joy God intended us to

>experence. May you be richly blessed, .... ah, but I think you

already

>are!

>

>Lynnie

>

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[Guest guest]

Hi everyone,

It's been so long since I have posted to this board

that it feels kind of wierd!

I have officially found out that I am definitely

pregnant with only one baby (had a scare of twins)

and I am due in Nov (11-15).

With one handicapped child already the military

doctors have put me into the " complicated/high risk "

clinic so they can keep a good eye on me and the

baby. The problem is that they don't understand why I

am refusing to have an amnio and the

alpha-feto-protien testing. I have told them the same

thing I told them with the first child, " I will not

give up or give back whatever God has decided to give

me therefore there is no reason for prenatal testing

that carries risks with it. "

Has anyone ever been in this situation?? Have you

found something that helps the docs to understand

your viewpoint?? Please email me privately if you

have any advice (no matter how small it may seem).

My email is: Jellyjenn@...

Thanks,

Jenn Fisher

Mom to Abby (18mos) w/ MCAD, DD, GERD, G-Tube,

Nissen, Late , & Craniofacial abnormalities

[Guest guest]

Dear ,

I was in the same position and it was difficult to make the docs

understand that an amnio would not change anything. What was pointed

out to me though was that the alpha fetal protein test can give them

information to help to make plans for this babies care. I don't know

if that was a line or not, but I did have that test done and not the

amnio.

If the test results will help us to better prepare for the birth of

this child or perhaps even initiate a therapy now, then I was

agreeable, otherwise not.

Good luck and congradulations on your " single " pregnancy.

Jeannine

[Guest guest]

Dear ,

I was in the same position and it was difficult to make the docs

understand that an amnio would not change anything. What was pointed

out to me though was that the alpha fetal protein test can give them

information to help to make plans for this babies care. I don't know

if that was a line or not, but I did have that test done and not the

amnio.

If the test results will help us to better prepare for the birth of

this child or perhaps even initiate a therapy now, then I was

agreeable, otherwise not.

Good luck and congradulations on your " single " pregnancy.

Jeannine

[Guest guest]

The similarities with some of the kids of parents on this list are

startling.Wel need to put together a composite list to see just how many of

the symptoms are shared.My son Jonah(before his recent setback),also had

GERD, aspiration,generalized demyelination and atrophy of the

brain,immobile,no speech, except he loved to babble,global delays, failure

to thrive,gastric dysmotility and malabsortion,primary carnitine deficiency

and immuno-suppressed.He also has metabolic crises. He was a very happy,

social and charming boy.He melted hearts and has a huge fan club.I am deeply

in love with my son,and I miss the fun I had with him before this last

crisis.I am thankful I was able to know him as he was and I'll be thankful

to know him as he is now, in time.I just need to learn new ways of

connecting to him.Antway,does anybody else agree about the similar

symptoms?>From: McDsFarm1@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Anyone ever been in this situation???

>Date: Tue, 11 May 1999 04:44:05 EDT

>

>From: McDsFarm1@...

>

>Re: has anyone else been in this situation.

>Hi , I am brand new to this list. A friend of mine recommended this

>list even though my son Josh (10) hasn't been diagnosed yet. I sure HAVE

>been in your situation. My husband and I had gotten pregnant after 5 years

>of trying. I had the usual AFP test that came back positive. It was

>actually a false positive we were to find out later. From there the

>doctors

>decided to do an amnio. That is when they found the chromosome

>abnormality.

>We (my son and I) have an extra piece of genetic material on our X

>chromosome

>that doesn't appear to come from anywhere (other chromosome). The doctors

>sent us to a genetic counsellor and thats when they said we should

> " terminate

>the pregnancy " . When we asked them about the fact that since it was such a

>rare abnormality, how did they know how it would affect the baby. They

>said

>they didn't know for sure because they had never seen anything like it in

>the

>medical literature. They gave us three days to decide. We were at " the

>limit " to decide to not go forward with the pregnancy. Well, I think why

>we

>didn't answer them that very day was because we had to go home and digest

>everything they had told us. We prayed alot and gave them the only answer

>we

>could. God gave us this little baby and we were blessed to be his parents.

>I don't think they understood, but we weren't concerned with " the doctors " ,

>we were concerned about our baby. So we just prepared for whatever god

>had

>in store for us and the baby that was coming to join our family. I know

>now

>that the decision we made was the only one we could have. So anyway, I do

>know how you feel right now. You have to do whats in your heart. Our

>little

>Josh has brought us so much. He is such an inspiration to anyone who meets

>him. He is a little charmer, and touches everyone in own way. I just

>love

>my little Josh to pieces. I can't ever imagine never having had him. He

>has

>changed our live so much, (but for the better). So we just take a day at a

>time and just spoil him rotten, and pour all the love we have into him.

>Good

>luck with everything, and stick to your guns with those doctors.

>, Momma to Josh (10) undiagnosed, asthma, seizure disorder,

>non-ambulatory, no speech (but loves to jabber) possible GERD (presently

>being evaluated for that), has delayed myelination of the white matter,

>diffuse atrophy, has had a small stroke sometime in the past. We just had

>him tested and evaluated by Dr. Jay Gargus UCI Medical, all the test are

>back but they won't tell us anything until June

>8,,,,,,,,,,arguhhhhhhhhhhh!!!!

>It's been 10 long years of searching.........maybe we will find something

>out

>then.

>

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