Connections » General Discussion

Hello and Thank You!

(3 posts)
  • Started 4 years ago by storymom
  • Latest reply from waynem10

Total votes:

  1. melissa
    Member

    Ann, Welcome to the group! I noticed you are from Decatur, Il. My husband and I grew up in Watseka and have a few friends that have settled down in Decatur. There are quite a few families from Illinois on this site. Rory's condition sounds like my son's, who was diagnosed with "ulnar deficiencies of the forearm (AKA ulnar aplasia/dysplasia, ulnar clubhand, etc.) Bilateral ulnar dysplasia is more uncommon than radial aplasia and 70% of the time only affects one side. If you type in ulnar clubhand in yahoo, there is an excellent webmed article on it. I am not 100% sure this is your son's condition, but your description is pretty right on with the characteristics. My son is also affected bilaterally, but at a little less on one side (he has an elbow and a good lengthen of the forearm bones, however is missing two fingers). He has always amazed me with how well he uses his "little arm". It still makes me nervous when I see him crawling on it, but it doesn't seem to bother him. He uses the arm to turn pages of a book and the arm has turned into his "shyness" security blanket. He uses the arm to cover his eye when someone new talks to him. I must say it is quite cute. We see an absolutely wonderful hand orthopedic surgeon at Shriner's in Chicago - Dr. Terry Light. His primary practice is at Loyola, but he sees patients and does surgeries on Fridays through Shriner's. Feel free to write anytime - here or privately. melissacurry@comcast.net Congratulations on your new little one.
    Posted 4 years ago #

  2. storymom
    Member

    Hello! My name is Ann, and I am glad to have found this group. Our family recently adopted a baby boy, Rory, who has severe hand/arm anomalies on both upper limbs. We have taken him to three specialists, and have been greatly disappointed in their advise, which has basically been, to teach him foot skills.
    He has never been given an official diagnosis. He has no elbow joint on either arm. On his right arm, he has 2 fingers, attatched to his wrist, and only a stub of a radius/ulna. On his left arm, it actually hinges backward, and he again has only a stub of a radius/ulna, and has 3 webbed fingers. He gets OT weekly, and every week we are amazed at the progress he is making! He is now 4 months old, and is reaching for things, and even attempts to hold toys. His biggest frustration is that he cannot get his hands to reach his mouth, and he REALLY wants to chew on them!
    I am very interested to see if any of you have children with similar limb differences, and if so, what you are doing for your child. Does anyone suggest prosthetics for this type of difference? I am also VERY interested in finding a doctor who will listen to some of my husband and I's ideas, instead of telling us nothing can be done. It is so nice to find a group of people who (hopefully) know what we are experiencing, and can understand some of what we are feeling.
    Thank you again for your wonderful website, and all the info. God Bless!
    Ann McKinney
    (and Dale, Brogan, Patrick, Keagan, Bronwyn, Tobin, and little Rory!)

    Posted 4 years ago #

  3. waynem10
    Member

    We had twins on October 7, 2009. One twin has no difficiences(Alexis) and the second has bilateral ulna dysplasia (Addison). Her arms are not severely bowed, she has no elbows, and has 2 fused fingers on each hand. I would love to talk to any of you who have experienced something similar to our situation. We would like to hear about surgeries and drs. that you have had done. Problems and solutions would also be welcomed. Thank you in advance.

    Wayne and Missy Schneider

    Posted 6 months ago #

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