http://limbdifferences.org/connections/ An online resource for families and friends of children with limb differences. en Tue, 07 Sep 2010 03:50:32 +0000 http://limbdifferences.org/connections/topic.php?id=1256#post-6027 Tue, 24 Aug 2010 09:26:51 +0000 Leventt 6027@http://limbdifferences.org/connections/ <p>Hi. About 3 weeks ago it was my wife's 40th week on the pregnancy. We went to hospital and the birth started. It was normal birth and i was also there holding her hand. As soon as she gave birth to him she started to ask where his hand and fingers are. We were really shocked. I never wanted to leave that room when people were waiting outside. It was the worst day i have ever lived. I am trying to be powerful and patient, especially with my wife.</p> <p>My little son Omer is now 3 weeks old and very pretty. Doctors said that there is no finger bones (phalanges) and metacarpal bones in his left hand. Just little 5 nubbins after wrist there are. They couldn't say about wrist bones because it is now cartilage in this age. They call this situation "hand agenesis" and say that the best solution is prosthetics. According to my researches it is also called "symbrachydactyly"</p> <p>So far, I have been doing some researchs over internet and couldn't find any answer. I think and hope that there must be something over this big world. His hand should be able to be developed as he is in womb by some drugs.. Or hand transplant may be a solution in near future if immunosuppressive requirement is over. Or there are so many developments on stem cells. A hand or hand bones may be constructed by stem cells in the lab and then transplanted to the arm. </p> <p>Are these impossible? If it is now, what about in the future?</p> <p>Thanks in advance! </p> http://limbdifferences.org/connections/topic.php?id=1259#post-6038 Sun, 05 Sep 2010 14:56:03 +0000 mj7pl 6038@http://limbdifferences.org/connections/ <p>Anyone have experience with Dr. Paley and/or going to St. Mary's in Florida? I just found his website thru a blog and am very interested in his work with tibia hemimelia as my daughter was born w/o her tibia, knee/ankle joint in her right leg. I'm looking for an alternative to amputation if at all possible. </p> http://limbdifferences.org/connections/topic.php?id=1258#post-6036 Fri, 03 Sep 2010 09:28:36 +0000 MrsDibby 6036@http://limbdifferences.org/connections/ <p>My 3mth old daughter has symbrachydactyly of the L hand. I feel there is little to no awareness of this disorder amongst pregnant women or general population even medical staff that i encountered i found i was explaining the disorder to them. The most valuable advice i can offer to parents newly impacted by this disorder is that this disability has the potential to snow ball for the baby if they are not offered ongoing therapeutic play and stimulation. The affected arm tends to become less viable causing further reduction in gross motor skills as neurologically, the babies brain re-wires its functioning to over compensate for the anomaly and focuses on stimulating the unaffected limb and hand. In order to prevent this from occurring, I have found it most beneficial to encourage the baby to use the affected arm in play and encourage her to grasp, bend, move the hand and arm. Where movement is not possible, I have introduced warm oil massage to stimulate her muscles and movement in the arm/joints (elbow). All of these things are working for us at the moment. Also, perseverance and diligence in encouraging young babies to meet developmental milestones in their development. I hope that what I am doing for my little girl can offer some help and assistance to someone out there..God Knows I could've used it! </p> http://limbdifferences.org/connections/topic.php?id=1163#post-5444 Sat, 24 Oct 2009 13:28:45 +0000 nicholasmom 5444@http://limbdifferences.org/connections/ <p>hi! i was just looking through some earlier postings and found a thread about awareness bracelets. i don't if anything ever came of it but i would be very interested in purchasing some for me and my family and friends. if anyone has any info on where to purchase these, let me know.<br /> thanks, jamie </p> http://limbdifferences.org/connections/topic.php?id=1257#post-6033 Fri, 27 Aug 2010 01:11:57 +0000 ggoldieloxs 6033@http://limbdifferences.org/connections/ <p>Hi, My son was born with a dislocated radius(left arm). From birth i noticed i could not extend his arm during play. Then doctors diagnosed him with a dislocated radius. He is now 7 in public school and does not have a problem dealing with his arm. He uses it as best as he can. He is unable to fully extend his arm. I find that his Humerus seems to be shorter on the side with the dislocation. I also find that his shoulder mussel is not developed on the left side. I understand the dislocation of the radius but what is going on with his shoulder/Humerus. Could it be there is a bigger problem then just the dislocation? Is there a surgery that could possibly help him gain his range of motion and mussel development in his arm? </p> http://limbdifferences.org/connections/topic.php?id=1203#post-5622 Sun, 04 Apr 2010 07:24:27 +0000 sara 5622@http://limbdifferences.org/connections/ <p>We recently were told our daughter has Type 3a Hypolastic Thumb and Type 0 of Radial Deficiency. He said all of the thumb bones are there but smaller than normal. Her metacarpal is smaller however wider at the base as it should be. Muscles are all underdeveloped as well. In addition, her wrist deviates slightly to the side as well. What is the typical prognosis for these types of deficiencies? At what age is surgery recommended? Also, it seems that because our daughter cannot use her thumb on her right hand, she already has begun to use her index finger to grab and suck on, etc. Can she re-learn to use thumb once corrected? Should we begin with OT?<br /> Thanks, (She is currently 5 months now) </p> <p>Posted 2 seconds ago # Edit </p> http://limbdifferences.org/connections/topic.php?id=1220#post-5704 Wed, 05 May 2010 07:34:20 +0000 questionaire lady 5704@http://limbdifferences.org/connections/ <p>Hi, I have a friend who has a 7 month old baby who's thumb is stiff, doesn't seem to be usable &#38; won't bend. Do you know what might cause this? Is this something to be worried about? ie. Is it related to other conditions?? I can't find any information about it!!! Please help.</p> <p>The baby is extremely quiet, smiles all the time to the point where it seems like he doesn't stop smiling, doesn't seem to be attentive to sounds around him and can't crawl.</p> <p>We are worried and thought someone must know something about what it could be?? </p> http://limbdifferences.org/connections/topic.php?id=1255#post-6024 Mon, 16 Aug 2010 20:43:10 +0000 cutiepie81 6024@http://limbdifferences.org/connections/ <p>Taveon is a very strong two year old that has had open heart surgery and a hand operation with one to come on the 27 of august.He was born with a full right arm that includes 4 fingers and no thumb and the left one with a half arm and 3 fingers, but through it all God has the last say so my baby Taveon is doing what a normal child woul do.so if theres anyone that wants to talk or anything you can cotact me at 678 353-7144 Tiffany &#38; Rodney. </p> http://limbdifferences.org/connections/topic.php?id=1254#post-6015 Tue, 10 Aug 2010 14:59:09 +0000 QTIPIE608 6015@http://limbdifferences.org/connections/ <p>Hi I had an ultrasound on last Friday and I found out my daughter has no arms. This was very hard for me. I get an ultrasound on Tommorrow to see what we can do. I need some advice. I have some in one ear telling me to abort and then I have some who says Love Her regardless. I have 3 other children that doesn't have this problem. I want to be able to love her but I don't know what to expect. </p> http://limbdifferences.org/connections/topic.php?id=1174#post-5487 Wed, 18 Nov 2009 20:34:06 +0000 sara 5487@http://limbdifferences.org/connections/ <p>My daughter was born about 3 weeks ago with a hypoplastic right thumb. The thumb looks smaller than her pinky. A bone survey showed that the thumb has all the bones in it, not sure whether the muscles and tendons are properly working. What type of surgery is typically done with this. Can she keep the thumb and have use of it? Do you know any good pediatric hand surgeons in the South Florida area?<br /> Thank you. </p> http://limbdifferences.org/connections/topic.php?id=1253#post-6005 Sat, 07 Aug 2010 19:54:24 +0000 dbodenheimer 6005@http://limbdifferences.org/connections/ <p>Hello,<br /> On our recent ultrasound it was detected that our baby boy is missing four fingers on his right hand. His thumb is there and his left hand is perfectly okay. Since finding out we have been on an emotional rollercoaster and have received a wide array of feedback ranging from "it isn't that big of a deal" to "have you considered abortion". we have no idea what to expect, what limitations our son will face and where to go from here. we keep remembering that this will get easier when our son is born and this isn't the only thing that we know about him. we would love any support because this experience is extremely isolating. we have one son now who is 2 years old. we know that he will be an amazing brother and we just want to go back to the joy we had felt. what hope is there for functionality? how soon do we start seeing doctors? how do we prepare ourselves for this?<br /> many thanks,<br /> danna </p> http://limbdifferences.org/connections/topic.php?id=646#post-3273 Tue, 13 Jun 2006 04:59:16 +0000 Noelamy 3273@http://limbdifferences.org/connections/ <p>Has anyone heard of doing an operation on a growth plate to stop the growth of one leg to let the other catch up?<br />My daughter has Fibular Hemimelia (missing her entire fibula), her Tibia is bowed, and the Femur is shortened also. She is still quite young, about 4 months old, but the doctor yesterday mentioned that they could do this other operation at a specific time to help the leg catch up if the difference does not end up being to much. Obviously, this is way down the road I would think.<br />This is the first doctor that we had gone to. We have since been to Shriners and think they are the greatest, so we will be doing what they advise us to do. <br />Just wondered if anyone else out there has heard of this.<br />Thanks! </p> http://limbdifferences.org/connections/topic.php?id=1168#post-5464 Wed, 04 Nov 2009 11:36:23 +0000 GodsGiftReagan 5464@http://limbdifferences.org/connections/ <p>Hi all. My Reagan was born with this. She is 4 about to turn 5 and has not skipped a beat. I had a renowned hand surgeon at Denver Children's Hospital tell me that typically at 6 weeks when most of us don't even know we are pregnant, at 6 weeks the heart is not strong enough to push thh blood to the digits. Typically these fetus miscarry and most don't even know that symbrachydactyly was present. Reagan is so good using her hands. She has it on her right hand and was right handed and had to modify her behavior and is now left handed. I think knowing that Reagan could have miscarried puts a different perspective on things. Be grateful that they are here and imagine the future children they can help. </p> http://limbdifferences.org/connections/topic.php?id=1098#post-5097 Wed, 04 Mar 2009 14:10:36 +0000 kylesmom 5097@http://limbdifferences.org/connections/ <p>Hi! I'm new to this site and was wondering if there was anyone out there familiar with mirror hand syndrome (ulnar dimelia). It's a congenital limb anomoly. Our son, who's now 8, was born with it. He's had 3 surgeries and is due for his fourth next week. His left arm is affected. His arm has two ulnas but no radius bone. He was born with 8 digits. I'm looking for anyone who has this but specifically I was in contact with a family from Oregon who's son, also named Kyle!, has mirror hand syndrome. I've lost touch with them and can't find their address and was wondering how their son is doing. If you're out there, I'd love to talk to you again! Any response is appreciated. He's been through 3 surgeries but we're still very nervous and apprehensive as his 4th surgery is next week.</p> <p>Jamie (kylesmom)<br /> Eau Claire, MI </p> http://limbdifferences.org/connections/topic.php?id=1252#post-5998 Wed, 28 Jul 2010 17:04:09 +0000 reina40 5998@http://limbdifferences.org/connections/ <p>Hi I am in southern california I am a mother to boy girl twins now 10 months. My daughter was born without a thumb on her left hand not a nub nothing there is no bone at all and it is looking like the thumb on her right hand is slightly deficient. She has a non functioning cystic kidney and an Atrial septal defect ( a small hole in the heart). Her physical development seems slow compared to her brother. She does'nt try to roll over she wont go on her tummy she starts crying. She will pull things, reach and play just not apply pressure on the arms. I am not sure if this is part of her limb difference and is there anything I can do to help strengthen her arms up? I am also considering the pollicization surgery I am just not sure with all her other stuff going on it would be the safest thing to do. Can this be done later in life as I would like to leave it her choice to have it done or not. Thanks for your info I am so happy i found this group i was really feeling alone. thanks </p>