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Post by dannysmom on Jul 24, 2005 18:16:24 GMT -5
Hi I am new to this site (this is my first post) my son was born in June with DS and requires surgery to repair his AV Canal defect. My husband and I sooo nervous and don't know what to do. We love him so much and can't bear the thought of open heart surgery. It is scheduled for Aug 4th at Boston Children's hospital. Any advice or success stories would be greatly appreciated.
Thanks, Lisa (mom to Elayna 2 1/2 and Daniel 2 months)
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Post by dannysmom on Jul 29, 2005 20:43:52 GMT -5
Kristen,
I just wanted to let you know that your response really moved me. You wrote from your heart and I couldn't agree with you more. I believe my son (and all children) is a true gift and he is to be cherished. I hope my son never knows that some women chose to abort rather than give their ds child life. How hurt he would be. Every child is a blessing and should be treated that way no matter how many chromosomes they have.
My intention of this posting isn't to debate pro life or choice, it is merely to have a voice for my son and rejoice his life. He was meant to be here and I love him more than any word could describe.
I wish people were more educated and thought about the meaning of 'life' a bit more. My son's life has meaning and value and he has every right to be on this earth along side every other person with 46 chromosomes.
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Post by dannysmom on Aug 16, 2005 19:12:22 GMT -5
I am with you Jessie, I can't find a tissue and my face soaked with tears.
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Post by dannysmom on Sept 7, 2005 21:52:04 GMT -5
Thank you so much for bumping this one up. I am new to this site (my son is 3 months today and I found out at birth about the ds) so I have only been learning about the world of ds for a short time. What an incredible post. I couldn't have needed a post like this more than I do tonight. I am sooo sick with the flu...therefore, I can't hold my son. His surgery was only a month ago, so we can't take any chances of him getting sick. So I miss my hugs and kisses of my kids.
In these 3 glorious months, I have cried plenty of tears (due to heart surgery last month) but my couragous, brave, beautiful son has put all my fears to rest. He has forever changed our lives for the better. I really enjoyed reading all the posts because I have soooo much to look forward to.
He just started swatting his toys, I even made a posting to share it all with you. Imagine that, the boy swatted a toy and it was like Christmas morning. All the excitement, I made 20 phone calls to tell everyone. He amazes me everyday and I feel so blessed to be his mommy.
PS..I read alot about sleeping......my little one came home from the hospital sleeping through the night (although we had to wake to feed him). I thought after surgery that would change..but it hasn't. He eates so much during the day..the docs gave us the ok to let him sleep through the night!!
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Post by dannysmom on Aug 11, 2005 21:00:41 GMT -5
Thanks A for brining this one back!! I can't wait for my husband to take my son fishing too. I dream about all the things we can (and hopefully) will do together as a family.
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Post by dannysmom on Feb 19, 2008 21:11:11 GMT -5
We've had a few scares due to petichae...but thankfully every time he was just fine. Daniel gets them very easily and we've now learned that and I no longer rush him into the doctors to draw blood. I have been reassured by several moms that although our kids have an increased risk, it still is VERY rare for our kids to develope leukemia. Unfortunately, it does happen, but if it does.....our kids respond better to treatment than the children in the typical population.
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Post by dannysmom on Sept 4, 2007 20:13:10 GMT -5
I think she looks healthy and gorgeous!! My Daniel is now 27 months. He's a tall one at a bit over 33 inches....but still skinny at 25 pounds. Here's a recent picture. My ped said as long as the numbers curve together then they are gaining proportionatly, there's nothing to worry about. When the weight moves up, but the height stays the same......then it might be time to begin watching more closely. I wouldn't worry....she's gorgeous!!
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Post by dannysmom on Oct 3, 2006 23:25:17 GMT -5
I feel for you. My Daniel is now almost 16 months and I had morning sickness the whole time with him. I can still vividly remember how awful it felt.
I have to say, I am very prone to feeling this way even when I am not pregnant. My emotions play a huge role in it. When I get nervous or stressed about something, I feel like I am going to throw up...and sometimes do. Also, to echo what others have said about hormomes......I'm 37 and I have heard menopause can start early!! Can't hurt to talk to a doctor. Many prayers you are feeling better soon!!
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Post by dannysmom on Jun 14, 2006 9:11:12 GMT -5
Hi, I sent you a pm with the pics. Let me know if there is anything else I can help with.
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Post by dannysmom on Jun 13, 2006 21:08:15 GMT -5
My son had av canal....which I believe is an ASD and a VSD. If you like, I can send you some pics of my sons experience in the hospital. Some people find it helpful to see beforehand...and others don't. So if you feel it would help you prepare...I would be more than happy to forward them to you. Waiting is so difficult...the unknown is scary...but honestly...my imagination was far worse than the actual experience. My son did amazingly well....I'll pray your son does too. Just pm and I can send along some pics if you like.
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Post by dannysmom on Jun 6, 2006 19:01:39 GMT -5
We found out at birth. I had many u/s as well as a level 2 around 17 weeks. No markers were found. I had a c section and my husband was told they suspected Ds just minutes after he was born. I was told about an hour later while I was in recovery. They also told us about the holes in his heart...but later that day after his echo was reviewed by the Pediatric Heart specialist..we found he would need open heart surgery.
My ped told me they were fairly certain and not to hold out hope for the actual blood tests to come back. He was right, because about 3 days later while I was still in the hospital....it was confirmed.
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Post by dannysmom on Mar 19, 2006 14:31:02 GMT -5
Congrats on the birth of your niece. You have certainly come to the right place for lots of questions and answers.
I too found out at birth and had several u/s as well as a level 2 and my son did not have any markers. However, he did have a heart defect which required surgery at 8 weeks old. He is now a healthy 9 month old!! I don't know exactly what they look for when testing..but many times...even with u/s Ds cannot always be detected.
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Post by dannysmom on Oct 6, 2005 21:49:32 GMT -5
Hi and welcome. My Daniel is 4 months too!! He is a good sleeper too. I would say whatever worked for your daughter and if you had good results then go for it.
My only hesitation would be as long as he is eating enough during the day to sleep all night. As long has he has no feeding issues, I can't imagine that having DS would change anything. Keep us posted.
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Post by dannysmom on Sept 28, 2005 7:19:21 GMT -5
Wonderful news!!! I can't wait to hear how amazingly she progresses!! Phew..big sigh of relief that it is over and you are home safe and sound!!!!
Well we were VERY cautiuos about taking Daniel out after surgery. My husband owns his own business and his office is only 1 mile away so we really are able to time things so I don't have to take him out too much.
We are 7 weeks after surgery and I have only recently began taking him around (resturants, grocery store etc). We have a nice backyard that is fenced in...so I brought him outside alot with my daughter and for walks, but if my husband and I could coordinate one of us staying home..then we did. Thank goodness the weather has been great and we have spend a great deal of time outside.
We were just so fearful that we made it through surgery..we didn't want to take any chances. I feel comfortable now showing him off all around town. He is quite a hit wherever we go. He has a full head of hair, so that catches peoples eye pretty quickly!!
Do what's comfortable, but if you don't have to take her out..then I wouldn't for as long as you can.
Congrats again and can't wait to hear about how she is doing!!
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Post by dannysmom on Sept 14, 2005 21:59:05 GMT -5
Hi, It's Lisa, Dannysmom. I believe we corresponded via email about surgery. I am so glad to hear the day is finally near. Please keep us posted on her progress and you are in my prayers. My son is 6 weeks out of surgery and doing super fantastic. One mom told me as our surgery day was approaching....."the other side of surgery is amazing"...and I can now say it truly is.
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