Was your special needs child your first?

iVillage Member
Registered: 04-28-2005
Was your special needs child your first?
6
Mon, 08-28-2006 - 5:51am

I posted here some time ago, so I'll introduce myself again.

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iVillage Member
Registered: 11-15-2005
Thu, 11-09-2006 - 10:27pm

No my special needs child is my 3rd, we actually all got tested for the genetic disorder and she is the first start of it. Its odd

Erin
http://momof3kids.proboards54.com

iVillage Member
Registered: 11-25-2003
Wed, 11-01-2006 - 9:20am

Hi Stephanie.


iVillage Member
Registered: 03-05-2004
Tue, 10-24-2006 - 9:57pm
First of all I'd like to say that your little man is such a honey! I have a sweet little foster son named Jaedyn that will be 9 months old tomorrow and looks just like him.
I'm extremely high risk for pregnancy so we were just going to have 1 and adopt the rest of them but then my pregnancy went better than we thought it would (not great, just better) and decided to try again. The second time around the pregnancy went ok also but our sweetie ended up with what we think is Angelman Syndrome ( http://www.angelman.org/angel/index.php?id=39 ). It happens about 1 in every 15-20,000 births. It is something genetic and had nothing to do with my high risk pregnancy.
We have decided to quit while we are ahead. While Peyton is such a wonderful and beautiful child and is pretty healthy, she is like an 8 month old baby (even though she's 2 1/2). She doesn't walk or talk and we don't' know if she ever will. She is a large child at 38 lbs and 38" tall, as is our other daughter. Getting her around is SO much work and now that she crawls (actually hops) I'm constantly having to pick her up and move her away from things. Not to mention that she NEVER sleeps through the night. If I imagine myself with 2 children like this I think it would do me in. My back already aches from lifting her and her wheelchair around all the time not to mention that she's going to be a lifetime of care for me. As she gets bigger it's going to be that much harder to do.
Right now we have 2 little foster boys that we are hoping to adopt. They are 3 years and 9 months old and are as much like bio kids to us as our own. I can really see (for myself) that kids are kids no matter where they come from.
Hope this helps,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever

iVillage Member
Registered: 08-20-2004
Tue, 08-29-2006 - 3:33pm
Hey Stephanie! To answer you question Faith is our first child. She is almost 17 months old...she was born April 1 2005!!!! We found out that her condition also happens in 1 in a 1000 pregnancies, most often with girls and once you've had a child with an encephalocele in does increase your chance of having another one although it's still a small chance. Chris and I are planning on trying to have another one once things settle down some with Faith, hopefully AFTER her brain surgeries. Despite the risks of having another we've decided to just trust the Lord because we know there's a reason for everything and things always fall into place. Faith was never suppose to live more than an hour but here we are. With any pregnancy there are risks and it's even scarier when dealing with genetics and not just a fluke thing. Faith is the second baby in my family with the encephalocele....a distant cousin had a little girl 40 years ago who only lived three months. This is JMO but I know that we will try again in time when we feel we're ready and can handle another one along with Faith
Good luck!!
Luanne
http://luslilangel.tripod.com/

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iVillage Member
Registered: 03-26-2003
Mon, 08-28-2006 - 6:28pm

I am sorry that you have had to go through this. I do remember you from when you posted some time ago. :) It's the same-name thing that triggered the memory.

I did not have to make such a decision, but I do have a little understanding. When my middle ds was a year old and Failure to Thrive, they did a CF test that was "possibly" positive. I had found out I was pregnant just days before the letter arrived to tell me this. Then, it was a month of agony waiting for the re-test, wondering if my new baby would be alright, wondering how I was going to deal with all of these young children and such a horrific disease. Fortunately, he tested negative. I can only imagine what that kind of pain, worry, and everyday living would be like.

I hope you keep posting!

BTW, my special needs child was born first, second, third, fourth and fifth... In other words, all five of them are special needs. THey all have learning differences and mental illnesses from schizophrenia to depression and everything in between.

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iVillage Member
Registered: 03-24-2003
Mon, 08-28-2006 - 7:34am

Welcome Stephanie!!


I'm so sorry about Braden's diagnosis, but he is a lovely baby!!

Maria :)