DownSyn Forum

Joy · Posted: July 05 2006, 3:27 PM Post subject:

Note: I joined Uno Mas also, so the following message is a duplicate for those of you who are members of both.

Hello! I’m finally introducing myself on this board after reading for several months. I’ve gained a lot of knowledge from each of you and hope I can contribute something of value to others. Many times I’ve wanted to just jump in but didn’t have the time for proper introductions at that moment so I’m taking the time now so next time you will all know who’s sticking their .02 worth into the conversation. I’ll try to tell enough so you know my perspective without boring you with too many details.

I’m Joy, wife of Rich and mom to Sara (4 yrs.) and Ibby (17 months with DS). Ibby’s real name is Richard but no one calls him that. Ibby was born in New Orleans on Mardi Gras day 2005 in a hospital on the parade route! In August of last year, we relocated to Houston courtesy of Hurricane Katrina.

Ibby had a very rocky start in life but is doing well now. He was delivered 10 weeks early by emergency c-section because he was in distress, having excess fluid around his lungs and in his abdomen. He was on a ventilator for about 3 weeks and in the NICU for 11 weeks. The initial diagnosis was that he had infantile leukemia and IF he lasted through those first few days, he would not live past 1 year because the difficulty in treating the leukemia at his age. Because he had 11 ribs, they did a chromosome analysis thinking we should know for treatment reasons if he had any abnormalities. On day 6 of life we discovered that he had DS and NOT leukemia and that he would survive. There’s a lot more to that story but that’s basically how we found out he had DS – and as you can imagine, it was the best news I have ever had in my life.

Ibby now has a g-tube and a nissen and takes very little orally, just nursing for comfort when I tube feed mostly. He is sitting up and scooting all over the house. He’s beginning to say a few words and signing whatever big sis demonstrates for him. He has no significant heart problems, just a small ASD that we hope will not require surgery. He’s already got tubes in his ears and is monitored closely for leukemia because of his blood problems at birth but is basically a happy, healthy baby. We love living in Houston and having access to the Texas Children’s Hospital, it has been a miracle for our son to have landed here.

Also, I have a younger sister who has autism and significant developmental delays so I have a sibling perspective as well. My sister is 37 and functions at a preschool level cognitively. (I guess her age gives me away as an older mom). She still lives at home with my mother, but is on a waiting list for a group home in Florida where they live.

As you can imagine, I know first hand the good and bad side of what’s ahead for my family – especially my daughter and I know we are one very lucky family.

Thanks for reading if you’ve made it this far. I look forward to getting to know you and your kids and learning from all of you!

Joy

PS – We are attending the NDSC in Atlanta this month so I hope to meet some of you IRL.

[Edited by Joy on 07-05-2006 at 03:57 PM]

_________________

Mom to Sara (11/01/01) and Ibby - DS (2/8/05)

waith · Posted: July 05 2006, 3:59 PM Post subject:

Hello Joy and welcome to Downsyn. Your children are beautiful. Looking forwards to getting to know you more.

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

kellyrimmer · Posted: July 05 2006, 5:53 PM Post subject:

Hello and Welcome!! Sara and Ibby are just beautiful!
I cant wait to read more about them and getting to know you and your family :p

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

Carson's Mom · Posted: July 05 2006, 7:30 PM Post subject:

Welcome. Your children are beautiful. I am glad you were transplanted to a place near a good hospital. I look forward to learning more about you and your family.

_________________
,
Kayla, Callan(5), Kenna (3), Carson 1 yr,

jmrcmama · Posted: July 06 2006, 1:20 AM Post subject:

Welcome! Your children are just beautiful! I am also new to the board but not a new parent!lol my Maggie is almost 11, she's counting the days! She tells me every day what day it is and how long it is to her birthday! Anyways I hope to get to know you and your family! Lisa

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Lisa, mama to Jacob 12-3-91, Maggie Jo 9-22-95 DS, Rusty 9-19-96, Cameron 11-12-2003

dect · Posted: July 06 2006, 3:08 AM Post subject:

Welcome to the group!

_________________
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

LinMac · Posted: July 06 2006, 5:45 AM Post subject:

So nice to met you all... Joy, Sara and Ibby.

A big welcome!

_________________
Linda & John
mom to Hannah Kate (Age Cool

, Robert (04/16/2004, DS)

Tigger · Posted: July 06 2006, 6:09 AM Post subject:

Welcome!! I am really glad you have joined us. Sarah and Ibby are good looking kids!!! How did he get the name Ibby? Looking forward to hearing more from you.

_________________
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

JenBrock'sMom · Posted: July 06 2006, 8:52 AM Post subject:

Joy and family welcome to Down syn. I'm Jen mom to Brock who 11 months and doing great. We live in DM IA. I was on maternity leave during hurricane katrina - so watched it non-stop. So sorry for the loss of your community, but glad you are liking Houston.

Your children are just gorgeous and I love Ibby - how did you land on that for his nickname? We have a mom named Ibby on here - I'm sure she'll connect with you.

Take care, and thanks for sharing your story.

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

pookeymom · Posted: July 06 2006, 10:01 AM Post subject:

Hello and Welcome!!! Your children are both beautiful!! I have five children. Two girls and three boys. I have identical twin boys both with DS. Great to meet you and hope to hear more about your family.

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Stacy
Mom to Tristin (9), Camille (5), Elijah (3), Caleb and Isaac (1)

McKenna · Posted: July 06 2006, 12:33 PM Post subject:

Welcome! Your kids are beautiful! I have a 23 month old daughter and a son on the way. We're in San Antonio...not too far!

McKenna

_________________
McKenna
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Darah Faith 11 Aug 04 (DS and AVSD repaired)
Baby due 18 Nov 06
Darah's Website

EliasMom · Posted: July 06 2006, 3:37 PM Post subject:

welcome, this is Alicia mom to Elias.

Ibby is so handsome! love his eyes... Smile

my boy is also from february... im attending to atlanta too, so hope to see you there! (elias is not comming with me Sad

)

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

jayne · Posted: July 06 2006, 4:45 PM Post subject:

Hi Joy I love your name I wanted to call Michaela 'Joy' also, but opted for Micheala after Colin's father Michael who passed away when I was pregnant. Ibby's absolutely adorable and sounds like quite a fighter. Sara looks like one of those beautiful victorian dolls with those big eyes and thick wavy hair. Welcome to Downsyn.

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Colin and Miranda parents of Bryan (DS) 29/01/03 and Kayla 14/3/05.

"Only the most sensitive fish discover the wetness of water."

http://makebelievers.blogspot.com/

jacknbellasmama · Posted: July 06 2006, 5:05 PM Post subject:

welcome!!!

_________________

Wife to John
Mommy to Keeley 9/22/01, Bella 2/19/04, Jack Ryan 4/7/06 (DS)
http://www.carepages.com/ServeCarePage?cpn=JackRyanClark&extrefid=tlcinvite

Maysonsmama · Posted: July 07 2006, 12:09 AM Post subject:

hello and welcome! so glad you found us! your children are so cute!! i am the mom of three. mayson our youngest was born with T21. she is now 20 weeks old! will be looking forward to getting to know you better!

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Amy mama to:
Jayden-7/94
Rylee-10/97
Mayson-2/06 DS

hayden's mom · Posted: July 07 2006, 1:03 AM Post subject:

Hello and welcome. This is a great site. My name is Laura and I am mom to 3 wonderful children. Hayden (DS) is now 3 and doing wonderful. We live in Texas as well. Your children are beautiful. I can't wait to learn more about you and your precious family.

_________________
Mommy to:
Holden 6
Hayden 2 (ds)
Jacie 1
And the Angels Danced the day you were born

mommartin · Posted: July 10 2006, 4:53 PM Post subject:

Hi and welcome to the site! Your kids are cutie pies and I am looking forward to learning more about you and them.

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

http://katies.stayinhomeandlovinit.com

Grandma to Olivia · Posted: July 11 2006, 12:09 PM Post subject:

Welcome! Thank you for sharing your story about your family. Your children are very beautiful! Sorry to hear about the rocky start, but so glad that things are going well now. I'm glad that the move to Houston has been a good thing. My granddaughter, Olivia, who is almost 3 was born with Down syndrome. She has been an absolute joy!

_________________
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

Mary Beth · Posted: July 11 2006, 1:30 PM Post subject:

Welcome Aboard, Joy and family.
Mary Beth

ajbest · Posted: July 12 2006, 8:47 AM Post subject:

welcome Joy and Family! our little angels are very close in age. so glad you joined in on this wonderful site. look forward to hearing more about Ibby and Sara - they are both beautiful kids! aj

_________________
Momma to Janna (AVCanal/Mitral Valve Repair-T21-02/02/05)
Wife to Joseph (TOF & still thriving)

"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi

Joy · Posted: July 12 2006, 9:29 AM Post subject:

Thanks to all for the warm welcome. Hope to meet some of you in Atlanta. I'm trying to memorize your pictures in case I recognize anyone. I will probably have Ibby with me a lot of the time so you can just look for him.
Joy

_________________

Mom to Sara (11/01/01) and Ibby - DS (2/8/05)