http://limbdifferences.org/connections/ An online resource for families and friends of children with limb differences. en Wed, 22 May 2013 15:35:33 +0000 http://limbdifferences.org/connections/topic.php?id=1128#post-5293 Sat, 11 Jul 2009 16:09:54 +0000 harleyb 5293@http://limbdifferences.org/connections/ <p>Congratulations on the impending childbirth. Unfortunately you are going to have to just wait. As Jen said in her post - there is nothing you can do about it right now - so wait it is. </p> <p>Hope this helps. </p> http://limbdifferences.org/connections/topic.php?id=1128#post-5279 Tue, 30 Jun 2009 10:44:01 +0000 jencurley22 5279@http://limbdifferences.org/connections/ <p>I don't know how to find people near by. Sometimes they just turn up. We met a nurse who has a grandson with fibular hemimelia by chance. If you are seeing a sepcialist I would ask them if they have any patients near by who have gone through similar things.</p> <p>I think it is really hard to know whats what because I think the bones are not completely calcified or hardened yet. I understand your wanting to know what is going on now but I think ultrasound is tricky. They did not even pick up my son's birth defect and he is missing toes and had a shortened bowed tibia. Maybe a higher quality ultrasound could help? </p> <p>If it were me I would resolve myself to not knowing exactly whats wrong because there is nothing you can do right now and you might be researching all kinds of things and find out it is less sever than they thought. There are so many kids who life wonderful full lives with limb differences, there are options for treatment and no matter what your baby will be ok! </p> <p>wishing you and your baby all the best! </p> http://limbdifferences.org/connections/topic.php?id=1128#post-5274 Mon, 29 Jun 2009 08:31:27 +0000 Meanders 5274@http://limbdifferences.org/connections/ <p>We have gone in for a couple of extra ultrasounds because we discovered our son, who is due later this year, will be born with a different right hand. At our 20 week ultrasound, the doctors originally thought he might have ectodactyly for the first few minutes and then they later thought he might have syndactyly in four fingers and no thumb. At our 24 week ultrasound, they thought he might have a few nubs instead of fingers and maybe no joined fingers... They just aren't sure and keep telling us different things each time. Is this normal? Do you ever reach a point where you can see the hand a little bit more clearly or is it something you just find out at birth?</p> <p>Also, is there any way to find out if there are other people in your local area who are going through something similar? I noticed there do seem to be a lot of groups out there for children and parents with limb differences, but they all seem to be scattered throughout the U.S., and none of them are too close to where we live. </p> <p>Thanks in advance for any words of advice. </p>