DownSyn Forum

Susan, Lily's aunt · Posted: August 29 2006, 12:33 PM Post subject: Hi

Hi, my name is Susan and I have recently become the great-aunt to a beautiful baby girl named Lily. Our story is rather long and one day my niece Heather may join this forum to tell her story so I will not go into that.

Lily is being adopted into our family and like most of the children not adopted here, we had no idea Lily would have DS. While it was a shock, of course, it was not a factor. We loved this baby before and we loved her just as much if not more when we found out. Our biggest concern has been Lily's complete AV canal. She has been to Shands and we were told as long as she was doing well, they would not do surgery until she was between 10-12 lbs. She weighed 7.5 at birth gained to 7.13 and then lost to 7.4. However, last week at her weigh in she was back up to 7.12. Yeah, Lily!! I am not sure how to insert a photo, but I will try.

If anyone has any advice on how we need to go about getting services for Lily, any information would be greatly appreciated. We are lost on that end. We know how to love her just not sure how to get her all the help she needs.

Well, if the photos do not take here is her caringbridge site.

www.http://caringbridge.org/visit/lily1[/img]

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Susan, Lily's aunt 7/27/06

kris10z · Posted: August 29 2006, 12:55 PM Post subject:

Welcome Susan!

Congratulations on beautiful Lily! What a wonderful addition she will be!

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

keri · Posted: August 29 2006, 3:42 PM Post subject:

Welcome Susan and Lily, Kait was also born with AV canal defect and has been doing amazingly well. To follow her story for details you can check http://caringbridge.org/cb/inputSiteName.do?method=search&siteName=kaitlynhansen
Cant wait to hear more about your little Lily.

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Keri Mom to:
Sydney 9-25-01
Jack 2-10-03
Kaitlyn DS 7-30-05 Brave Heart 2-24-06

dugarry · Posted: August 29 2006, 4:10 PM Post subject:

welcome, all the best and please keep us all posted.
all our love from the pitt family x x x

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Daz and Nic, mummy and daddy to Owen (19mths) and Kacie (DS) 3 months

Carson's Mom · Posted: August 29 2006, 8:13 PM Post subject:

Welcome. Lilly is beautiful. I am looking forward to hearing more. This site is a great place for information and support. We would love to have Lilly's Mom join us as well.

Kayla

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

Tigger · Posted: August 30 2006, 12:23 AM Post subject:

Welcome to downsyn. Lily is a real cutie. Talitha (now 9 mnths) had an AV canal defect (AVSD) and had surgery at 4 1/2 months. She is doing great. Looking forward to hearing Lily's story and hearing more from her doting great-Aunt Very Happy

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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

rhonda · Posted: August 30 2006, 4:41 PM Post subject:

Hello, welcome and congratulations on your newest addition to your family!! Unfortunately for some reason I'm unable to see the pics Crying or Very sad

!! My son Dylan also had AV Canal and he had his repair at 5 months. When the time for her surgery gets closer feel free to ask any questions.

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Rhonda

Taylor 13, Jordan 12, Dylan 3

Abigail'sMom · Posted: August 30 2006, 4:54 PM Post subject:

Hello and welcome to the site! She is beautiful and I love the name Lily. We look forward to hearing and talking with you in the future.

Again welcome and congratulations!

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Eli
Mom to Abby (DS 10/21/03), James Thomas (01/31/06)

kctahoe · Posted: August 30 2006, 4:57 PM Post subject:

Welcome little Lily and family! I will be praying for Lily to gain weight and grow in health. Do keep us updated on how Lily and family are doing.
--Kim

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Kim. Wife to Ray, Mommy to Charlie 1/8/06

JenBrock'sMom · Posted: August 30 2006, 6:15 PM Post subject:

Welcome Susan and Lily. Services depend on the state in which you live. You can get a lot of good information from the NDSS. You may also want to talk to your hospital's social workers or your state health and human services department. Many states qualify babies/people with Ds for services.

Good luck and congratulations on the arrival of Lily!

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

Susan, Lily's aunt · Posted: August 30 2006, 6:26 PM Post subject: Thanks for the Welcome

Thanks soo much for the warm welcome. I am sure I will have plenty of questions in the future, and I will check the NDSS website. I have been browsing this site since I found it after Lily's birth and you guys are the nicest and most helpful. Look forward to getting to know everyone.

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Susan, Lily's aunt 7/27/06

EliasMom · Posted: August 30 2006, 7:19 PM Post subject:

welcome!!! Smile

beautiful girl

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

kellyrimmer · Posted: September 05 2006, 12:47 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