DownSyn Forum

Mindi · Posted: August 28 2006, 12:11 PM Post subject: New here, our story

I will try to keep this as brief as possible. First I am a mommy to 4 lovely children and am lucky enough to be able to stay at home full time with them. I am a former Paralegal/Investigator for the federal government and still have that inquisitive nature that I satisfy by doing a ton of research. The docs all teased that I had a medical degree through my pg and all of the tests and diagnosis.

I began my 4th pg at the Perinatologist due to a high risk status from my last pregnancy with Elle. Little did I know that I would be high risk for much different reasons this pg. Things progressed normally in my pg, no Pre-E this time around and I was feeling great. I refused all testing cvs and Quad screen. All was well until my 20 week level II u/s where they once again saw soft DS markers, as they did with my previous pregnancy. I wasn't too concerned cause Elle turned out just fine and Kasen had some of the same markers, ie missing middle pinky bone in the left hand, shortened humerus and femur.

We ended up opting to do the quad screen in hopes that it would ease my fears this time around and I could just enjoy my pregnancy (we declined all testing w/Elle). Well the quad came back really odd. My HcG was 6 times the amount it should have been. The genetic counselor assumed I was carrying multiples because even the numbers that should be low to indicated DS were high. The genetic counselor was sure the test indicated another pg with placental issues so she felt it was crucial to do an amnio the following day so the docs would best know how to treat me.

We were unable to do the FISH test due to insurance restrictions so we waited the full 14 days for our answer. My reaction was complete SHOCK to the news that Kasen had T21; the genetic counselor basically assured us that he did not have T21, the quad screen numbers just didn't match up with DS. I had myself a good cry and grieved rather quickly before moving on and diving in to gathering all the info I could about DS.

I have mixed emotions on finding out prenatally that Kasen would have DS. For me it was great to be able to spend time learning as much as I could and preparing myself and my family for what we would be facing with Kasen. We were told early on that he had AV canal defect and would require surgery within the first few months of life. Through much prayer and a miracle from God, Kasen did not have AV canal. He does have a tiny muscular VSD which the ped cardiologist expects to close on its own in the next few months.

I just realized how much there is to tell in our story and I don't want to lose any readers that have made it this far in my long post, so I think I will post part 2 later. The little guy needs me right now. He is sick for the first time with a fever and stuffy nose. I am guessing that this is the first in a long bout of colds/illnesses that we will endure this Fall/Winter.

I am so excited to be here and hope to meet you all and make some new friends, find support and to be supportive.

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Mindi, wife to Stu, mommy to:
Brittany 11
Kalia 9
Ellarie 2
Kasen (DS) born 7/21/06

mary c · Posted: August 28 2006, 12:25 PM Post subject:

Hi Mindi, glad to have you on board. Your Kasen is just adorable. Our Anna had the same VSD (as well as an ASD and PDA) but they all eventually closed on their own. We look forward to hearing more from you.

I am also a SAHM but was a prosecutor for many years so I too like to figure things out. We declined the amnio, but had every other test known to mankind, none of which picked up the DS, so we had a bit of surprise about a half hour after Anna was born. If you would like to hear her story in more depth, check out our family website, www.annasamigos.com.

I'm sure you will feel like one of the family here before long.

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Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

EliasMom · Posted: August 28 2006, 12:52 PM Post subject:

welcome!!

im a sahm too. i only have one boy. his name is elias, he's 18 months, and we are born and live in mexico Smile

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Ali, wife to Felipe, mom to Elias (Feb 21 2005)

Emdad · Posted: August 28 2006, 1:17 PM Post subject:

Welcome! Kasen has the best birthday, he shares it with my Emma!
Jeff, Dad to Sam, 9, and Emma, 7.
Post away! It's great to meet you.

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Nature goes her own way and all that to us seems an exception is really according to order.
-Goethe

LinMac · Posted: August 28 2006, 2:25 PM Post subject:

I love that picture of Kasen!
Welcome to you and your family.

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Linda & John
mom to Hannah Kate (Age Cool

, Robert (04/16/2004, DS)

My Boys · Posted: August 28 2006, 2:26 PM Post subject:

Welcome to the site.

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Michele B.

Patrick (5-16-00)
Kyle (DS) (1-13-03)
Cameron (11-5-2005)

karlismom · Posted: August 28 2006, 3:03 PM Post subject:

Welcome!! Kasen is beautiful!!

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Shylo
Mom to Karli Leanne 4/29/05

JenBrock'sMom · Posted: August 28 2006, 4:28 PM Post subject:

Mindi, Kasen and family, welcome to Down syn! I'm Jen mom to Brock 13 months. We found out at birth, and I'm also quite a researcher so have learned tons this past year. Brock is doing great, in fact he is on his first antibiotic since leaving the hospital this week for a sinus infection - so hoping Kasen gets better soon and has a healthy fall/winter.

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JenBrock'sMom & wife to Jay
Brock 7/28/05

waith · Posted: August 28 2006, 5:41 PM Post subject:

Welcome to Downsyn, all of your children are beautiful ,but Kasen is sooooooooo sweet. Looking forwards to seeing more of him.

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Maxine UK. Mum to Elliott 12, Dominic 2 DS.

Mom2Sean · Posted: August 28 2006, 6:18 PM Post subject:

Welcome to DownSyn! YOur little man is just adorable! I love all the pics you shared in the photo section too. It sounds like your little prince is in just the right place!

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Deborah, Momma to Aidan Riley 11-15-02 & Sean Patrick 9-4-04

mesmom · Posted: August 28 2006, 9:09 PM Post subject:

Welcome, Your family is just precious!! I am sure you will enjoy this board so much. Lots of information and tons of support. And many many laughs too. Can't wait to hear part 2. Blessings.

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"All the darkness of the world, can not put out the light of one small candle." Author unknown

Cameron · Posted: August 28 2006, 9:24 PM Post subject:

Kasen is so precious - all your children are beautiful! I hope he is feeling better soon. Welcome! Looking forward to reading more about your family!

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Rae

Brooke 4/1/03 and Cameron (ds) 4/8/05

owensmom · Posted: August 28 2006, 11:56 PM Post subject:

welcome! kasen is a doll.

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Tricia
mom to Jason 12/24/03 and Owen (ds) 6/29/06

kathleen · Posted: August 29 2006, 2:18 PM Post subject:

welcome, welocme, I saw your beautiful man on the photos section and decided to hear more about your family. He sounds like he is doing well. I look forward to hearing more.

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Kathleen - Avery's Mommy
Chico, CA

Tigger · Posted: August 30 2006, 12:10 AM Post subject:

Hi and Welcome to downsyn. Kasen is a cutie, as are your other kids. I am looking forward to reading part 2 and hearing more about your family. Talitha has had a bad winter so I am hoping as spring comes that she will get over her pneumonia and be healthy throughout summer. I hope Kasen feels better soon too.

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Karyn
Mum to Nikki (19 Jul 89), Stefanie (3 Sep 96), Joel [18 June 98] and Talitha (DS) (18 Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Ibby · Posted: August 30 2006, 1:30 AM Post subject:

Mindi,

Welcome! You've found a wonderful place here for love and support. Welcome to the family. I am also a SAHM...but I have a few more than you!

I also found out prenatally about AJ's diagnosis. We'll have to chat about that sometime. I look forward to getting to know you!!

Ibby

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Wife to Tim. Mother to Maggie,17; Bridget,15; Kevin,13; Sean,12; Daniel,9; Catherine,7; Robert,6; Emily,4; Maria,2; Hope,14 months, AJ (Ds) June 14, 2006

kris10z · Posted: August 30 2006, 8:38 AM Post subject:

Welcome!

Funny thing- when I was pregnant with Ethan, my husband came home and said, I have a name. He says, Kayson. We came so close to naming him Kayson. Now, my best friend is going to be naming her son Kason. The name is getting popular!!!

He is beautiful!

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Kristen: Wife to Scott, Mommy to Ethan (5/25/01, DS & ALL)

mommartin · Posted: September 01 2006, 2:03 PM Post subject:

Hi and welcome to the site.

Your kids are adorable Very Happy

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Katie
Jerry 1/02,Bethany 8/03(cp)Faith 5/05 (ds)

http://katies.stayinhomeandlovinit.com

Laurieannie · Posted: September 01 2006, 5:29 PM Post subject:

Mindi, Welcome to Downsyn. You have a beautiful family. I love the shot of Kasen. Looking forward to hearing more of your family.

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Laurie- wife to Wayne
mom to Kate-22, Micah-5 and Reuben(ds)4/21/04

If you treat an individual as he is, he will stay as he is; but if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be. ~Goethe

Grandma to Olivia · Posted: September 01 2006, 6:45 PM Post subject:

Welcome! You have a beautiful family! Kasen is adorable!!

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Cindy
Olivia's Grandma

Bitter are the tears of a child: Sweeten them. Deep are the thoughts of a child: Quiet them. Sharp is the grief of a child: Take it from him. Soft is the heart of a child: Do not harden it. - Pamela Glenconner

sarahuk2 · Posted: September 01 2006, 6:54 PM Post subject:

Welcome and thanks for sharing your story and great news that Kasen's heart is OK. I just wanted to say don't worry too much about colds etc - obviously be vigilent but DS doesn't necessarily mean worse health overall. Immy has been super healthy so far and her colds have been no worse (and often better) than her too brothers. Just enjoy your baby and trust your instincts

Sarah

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Mum to Charlie,9, Tom 4 and Imogen, 3!(ds)

dect · Posted: September 01 2006, 8:36 PM Post subject:

Hi Mindi! Welcome on board and can I saw what a gorgeous family you've got there!

I look forward to finding out more!

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Deryck
Dad to Xena 2 Aug 97, Lucas 28 Jun 99, Persephone 12 Jan 2004 (DS & AVSD repaired)

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind - Theodore Geisel (Dr Seuss)

http://www.picklesnet.co.uk

huskies9798 · Posted: September 02 2006, 3:51 PM Post subject:

just catching up to everyone hello & welcome to the family cant wait to read part 2 Wink

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chris
mommy to brooke ds 8-30-04 BOY edd 1-24-07
my precious little angel & peanut on the way!

kellyrimmer · Posted: September 05 2006, 12:54 AM Post subject:

Hello and WELCOME!!!!!!

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Kelly Rimmer
Mom to
Paige 11-12-92
Aaron 06-16-99
Alexis 08-19-05 (DS)
Baby #4 11-04-06