Comments on: About Us http://www.amcdocumentary.org Living with AMC Sat, 04 Feb 2012 10:34:28 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Siphiwe http://www.amcdocumentary.org/about-us/comment-page-1#comment-22974 Siphiwe Tue, 20 Dec 2011 14:21:57 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-22974 Hi My name is Siphiwe from South Africa , i have 3 years old baby boy .He has AMC.Weonly know about his condition at birth.1st operation on his elbows was done when he was 4 months old.Next year in Feb 2012 he going for the clubfeet operation . Hi
My name is Siphiwe from South Africa , i have 3 years old baby boy .He has AMC.Weonly know about his condition at birth.1st operation on his elbows was done when he was 4 months old.Next year in Feb 2012 he going for the clubfeet operation .

]]> By: Katherine http://www.amcdocumentary.org/about-us/comment-page-1#comment-21045 Katherine Sun, 04 Dec 2011 23:18:51 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-21045 My names Katherine. I'm 21 and have Arthrogryposis in all 4 limbs. It's seems most people on here have very young kids with Arthrogryposis. Anyways. I'm open to any questions. Just email me at k _ q u i n n 9 0 @ y a h o o . c o m My names Katherine. I’m 21 and have Arthrogryposis in all 4 limbs. It’s seems most people on here have very young kids with Arthrogryposis. Anyways. I’m open to any questions. Just email me at k _ q u i n n 9 0 @ y a h o o . c o m

]]> By: amcdocumentary http://www.amcdocumentary.org/about-us/comment-page-1#comment-13035 amcdocumentary Sat, 23 Jul 2011 02:34:57 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-13035 Myra, Congratulations and so happy you found me and our family. For every depressing piece of information, I can share 20 other positive stories. A few resources that can help you and your family. Please join the AMC Support Forum at http://www.amcsupport.org. There are so many resources available and families that know just what you are going through now, even as a grandparent. Second, please watch this interview with Dr. Harold van Bosse at Shriners Philadelphia. You can see the full version here (36 min): http://www.vimeo.com/24626314 and also see 3 shorter clips of the full interview here: http://www.youtube.com/amcdocumentary. There are some great tips that your daughter/daughter in law should be aware of like drinking more caffeine to get the baby moving. I will email you separately too, I have some local contacts that can also help your family. Peg Myra,
Congratulations and so happy you found me and our family. For every depressing piece of information, I can share 20 other positive stories. A few resources that can help you and your family. Please join the AMC Support Forum at http://www.amcsupport.org. There are so many resources available and families that know just what you are going through now, even as a grandparent. Second, please watch this interview with Dr. Harold van Bosse at Shriners Philadelphia. You can see the full version here (36 min): http://www.vimeo.com/24626314 and also see 3 shorter clips of the full interview here: http://www.youtube.com/amcdocumentary. There are some great tips that your daughter/daughter in law should be aware of like drinking more caffeine to get the baby moving. I will email you separately too, I have some local contacts that can also help your family.
Peg

]]> By: Myra Hardesty http://www.amcdocumentary.org/about-us/comment-page-1#comment-13030 Myra Hardesty Fri, 22 Jul 2011 23:43:13 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-13030 My grandson to be (at 28 weeks) was just diagnosed with AMC. I was devastated by all the information on the web... Then I happened onto your site. Thank you for giving us all hope! There are so many variables to his possible condition- and I thought it was the end of the world. (only until I came onto your site) I now feel ignorant to my situation- and pray that my grandson's condition teaches soft hearts to those around him. Regards, Myra in MD My grandson to be (at 28 weeks) was just diagnosed with AMC. I was devastated by all the information on the web… Then I happened onto your site. Thank you for giving us all hope! There are so many variables to his possible condition- and I thought it was the end of the world. (only until I came onto your site) I now feel ignorant to my situation- and pray that my grandson’s condition teaches soft hearts to those around him.

Regards,
Myra in MD

]]> By: Steve Pustell http://www.amcdocumentary.org/about-us/comment-page-1#comment-11406 Steve Pustell Fri, 17 Jun 2011 03:15:53 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-11406 Hello Peg. My name is Steve, and I was born in 1954 into a family with no history of arthrogyposis .. and with an identical twin brother, who does not have arthrogryposis. They didn't know much about it then, so my care was probably very different from what your son Owen is getting. I am affected in all my extremities, but much more in my lower extremities than my upper. I wanted to leave you a message of hope for your son (even though i know from the trailer for your documentary that you pretty much know this already). With some perspective of the years I can tell you that, although there have been many events in my life i hope i don't have to repeat, and even though i have limitations i wish i didn't have, my life is not defined by my physical disabilities, it is much more about the same issues that any able body person deals with, how to be a good husband, an effective father, how to use my time and my resources in a way which best serves those I love and care for. I am not defined by my arthrogyposis. I am defined by who i am, arthrogyposis only defines what i have to work with.. not the work i do with what i have. I wish the same for your son, and it sounds like he has a good start with you as his Mom. This was a gift given me my how my parents raised me, (they enabled me to grow up more aware of what i can do, than what i can't). And it has been extended through my supportive and loving and amazing wife today. I am truly blessed with a career, a home, a family, an amazing wife, 4 wonderful children, and a future which only God knows, but which i am confident in. Tell Owen not to listen to those who list what he can’t do.. and work together with him to find out what he can do. With creative modification i can ride a bicycle (although now i find i enjoy a hand cycle more).. I can ski (on a mono sit ski, not well.. but i could if i worked at it), i am a pilot, drive a standard transmission car, I am working with computers as my profession, and (like most people) what i regret most in life are the poor choices i have made in my life, not any disability I have been afflicted with, and what i like most in life, are the results of any good choices i have made, and the blessings of a loving God. All my blessings and encouragement to you and your son Owen. I am sure he will have a wonderful life! Steve P Hello Peg.
My name is Steve, and I was born in 1954 into a family with no history of arthrogyposis .. and with an identical twin brother, who does not have arthrogryposis. They didn’t know much about it then, so my care was probably very different from what your son Owen is getting. I am affected in all my extremities, but much more in my lower extremities than my upper.

I wanted to leave you a message of hope for your son (even though i know from the trailer for your documentary that you pretty much know this already).
With some perspective of the years I can tell you that, although there have been many events in my life i hope i don’t have to repeat, and even though i have limitations i wish i didn’t have, my life is not defined by my physical disabilities, it is much more about the same issues that any able body person deals with, how to be a good husband, an effective father, how to use my time and my resources in a way which best serves those I love and care for.
I am not defined by my arthrogyposis. I am defined by who i am, arthrogyposis only defines what i have to work with.. not the work i do with what i have.
I wish the same for your son, and it sounds like he has a good start with you as his Mom.
This was a gift given me my how my parents raised me, (they enabled me to grow up more aware of what i can do, than what i can’t). And it has been extended through my supportive and loving and amazing wife today. I am truly blessed with a career, a home, a family, an amazing wife, 4 wonderful children, and a future which only God knows, but which i am confident in.
Tell Owen not to listen to those who list what he can’t do.. and work together with him to find out what he can do. With creative modification i can ride a bicycle (although now i find i enjoy a hand cycle more).. I can ski (on a mono sit ski, not well.. but i could if i worked at it), i am a pilot, drive a standard transmission car, I am working with computers as my profession, and (like most people) what i regret most in life are the poor choices i have made in my life, not any disability I have been afflicted with, and what i like most in life, are the results of any good choices i have made, and the blessings of a loving God.
All my blessings and encouragement to you and your son Owen. I am sure he will have a wonderful life!
Steve P

]]> By: Ana http://www.amcdocumentary.org/about-us/comment-page-1#comment-10063 Ana Tue, 05 Apr 2011 02:02:37 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-10063 I find this interesting since I have arthrogryposis. Where can I see this documentary? It's just that I've never known anyone like me so I think it's interesting to see other people going through the same things I'm going through. Thanks! I find this interesting since I have arthrogryposis. Where can I see this documentary? It’s just that I’ve never known anyone like me so I think it’s interesting to see other people going through the same things I’m going through.

Thanks!

]]> By: Holly Deckard http://www.amcdocumentary.org/about-us/comment-page-1#comment-10004 Holly Deckard Fri, 01 Apr 2011 00:00:13 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-10004 Did you feel your baby move a lot in utero? Or did movements decrease? If so, what week? Did you feel your baby move a lot in utero? Or did movements decrease? If so, what week?

]]> By: Holly Deckard http://www.amcdocumentary.org/about-us/comment-page-1#comment-10003 Holly Deckard Thu, 31 Mar 2011 23:58:40 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-10003 Hello, my name is Holly and I am 30 weeks pregnant and the dr. suspects distal arthrogryposis with my baby. She has all of her fingers formed and can open her hands, but normally doesn't and likes to keep them closed. Both of her feet are clubbed. Can you please share with me what led them to believe your son has AMC and how you are doing now? I notice you posted this awhile ago... any info would be appreciated. Thank you so much. Hello, my name is Holly and I am 30 weeks pregnant and the dr. suspects distal arthrogryposis with my baby. She has all of her fingers formed and can open her hands, but normally doesn’t and likes to keep them closed. Both of her feet are clubbed. Can you please share with me what led them to believe your son has AMC and how you are doing now? I notice you posted this awhile ago… any info would be appreciated. Thank you so much.

]]> By: amcdocumentary http://www.amcdocumentary.org/about-us/comment-page-1#comment-9736 amcdocumentary Tue, 15 Mar 2011 18:58:10 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-9736 Tanya, It is my goal to have this completed by early Fall at the latest. I am hoping to have a rough cut available to share with attendees at our annual AMC convention in July. As soon as I have any news or details, I will be sharing via the website. I will make sure I keep you posted. Peg Tanya,
It is my goal to have this completed by early Fall at the latest. I am hoping to have a rough cut available to share with attendees at our annual AMC convention in July. As soon as I have any news or details, I will be sharing via the website. I will make sure I keep you posted.
Peg

]]> By: amcdocumentary http://www.amcdocumentary.org/about-us/comment-page-1#comment-9735 amcdocumentary Tue, 15 Mar 2011 18:56:51 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-9735 Kati, Thanks for your comment. I am happy to help put you in touch with other AMC families or answer any questions you may have regarding treatment. If I can ever be of help, please feel free to reach out. Good luck with your degree and thanks for your dedication to our kiddos. Peg Kati,
Thanks for your comment. I am happy to help put you in touch with other AMC families or answer any questions you may have regarding treatment. If I can ever be of help, please feel free to reach out. Good luck with your degree and thanks for your dedication to our kiddos.
Peg

]]> By: Kati http://www.amcdocumentary.org/about-us/comment-page-1#comment-9071 Kati Sat, 12 Feb 2011 05:16:33 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-9071 I am an occupational therapy student and I chose to write a report about AMC not knowing anything about it. I am so moved by your website and the trailer for your documentary. I want to thank you for helping me start the process of learning how I can best serve these very special children and families when I graduate. I wish you and your family all the best of luck and happiness and can't wait to share your finished product with my classmates and faculty. Kati Soleil OTS East Carolina University 2012 I am an occupational therapy student and I chose to write a report about AMC not knowing anything about it. I am so moved by your website and the trailer for your documentary. I want to thank you for helping me start the process of learning how I can best serve these very special children and families when I graduate. I wish you and your family all the best of luck and happiness and can’t wait to share your finished product with my classmates and faculty.
Kati Soleil OTS
East Carolina University 2012

]]> By: Tanya http://www.amcdocumentary.org/about-us/comment-page-1#comment-8830 Tanya Wed, 26 Jan 2011 01:52:54 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-8830 When will this be available for purchase? When will this be available for purchase?

]]> By: Jennifer WoodenLegs Carter http://www.amcdocumentary.org/about-us/comment-page-1#comment-8316 Jennifer WoodenLegs Carter Mon, 03 Jan 2011 05:05:10 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-8316 yes the video was great made me cry, she was right. my daughter isnt broken. to me she is perfect. love your website. thank you yes the video was great made me cry, she was right. my daughter isnt broken. to me she is perfect. love your website. thank you

]]> By: Danielle http://www.amcdocumentary.org/about-us/comment-page-1#comment-8182 Danielle Tue, 28 Dec 2010 04:27:45 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=9#comment-8182 I found your website through a note on Babycenter.com. I'm 34 weeks, and was just told my son has AMC. Not knowing what it was, I've been looking everywhere for information. It's scary. Not nearly as scary as when they tested for Trisomy 18, but it's still intimidating to me. I'm really happy to see websites about AMC, and your documentary preview, well honestly made me cry. Danielle I found your website through a note on Babycenter.com. I’m 34 weeks, and was just told my son has AMC. Not knowing what it was, I’ve been looking everywhere for information. It’s scary. Not nearly as scary as when they tested for Trisomy 18, but it’s still intimidating to me. I’m really happy to see websites about AMC, and your documentary preview, well honestly made me cry.

Danielle

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