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Met with Hand Surgeon yesterday

TMs1stBabyTMs1stBaby
in Special Needs
I don't post over here often, but my daughter has and agenesis of the corpus callosum and a thumb duplication on her left hand.  Anyway, I met with a surgeon yesterday and am so happy.  They are going to be able to remove the extra thumb and she will have full functionality and it will look fairly normal.  Also the doctor told us that it is covered by insurance.  I was worried it would  be considered cosmetic.  We are doing the surgery in September.  I can't wait!   Only now I have 4 months to be nervous about her going in for surgery.  Ugh.
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Re: Met with Hand Surgeon yesterday

  • SobachkaSobachka

    How exciting! Hope the surgery goes well, and your daughter recovers quickly! You will probably focus on how to explain this to your daughter in the next 4 monhts. And I know you will enjoy the next 4 months of your daughter being the way she is (and her hand the way it is).

    GL!

     

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  • JustinloveJustinlove member
    Glad to hear the appointment went well.  My dd also has c-acc (I think we are the only moms of acc girls on the board).  I took a peak at your blog.  Your DD is adorable.  Interesting that your daughter has a digit issue.  I think Assembly_reqd's son has some digit issues as well.  DD has a pinky toe that sits closer to the top of her foot (almost overlapping her fourth toe) that we will eventually get addressed due to potential shoe issues.  Wondering outloud if digit issues are more common with ACC kids with chromosomal issues.  Interesting....
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  • TMs1stBabyTMs1stBaby

    imageJustinlove:
    Glad to hear the appointment went well.  My dd also has c-acc (I think we are the only moms of acc girls on the board).  I took a peak at your blog.  Your DD is adorable.  Interesting that your daughter has a digit issue.  I think Assembly_reqd's son has some digit issues as well.  DD has a pinky toe that sits closer to the top of her foot (almost overlapping her fourth toe) that we will eventually get addressed due to potential shoe issues.  Wondering outloud if digit issues are more common with ACC kids with chromosomal issues.  Interesting....

    That is interesting.  I haven't met with the geneticist yet, we are going next month, so I don't know about our chormosomal issues yet, but that is a strange coincedence that all three of us have some sort of digit issue.

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  • Assembly_ReqdAssembly_Reqd member

    That is great that you can get them fixed!

    Digit issues (polydactyl?) are something listed in the research for one Nate's Chromosome deletions. He has adducted thumbs (folded into his palm) and his skeletal xray's noted that the 2nd metacarpel on the thumb is shortened. When you look at the thumbs, they look more like a finger or are "digitized" as the geneticist says. We are wearing special splints at night to help relax the muscle in the plam and so far it is working really well.

    His second and third toes look a little funky too IMO, but the geneticist didn't mention them in her laundry list of things "different" about our DS.

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  • amajaneamajane member
    My DD doesn't have ACC but does have funky fingers and toes. I think it is just due to whatever chromosomal issue she has. I think it is pretty common in a lot of kids with special needs.
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  • breezy0629breezy0629 member

    DS had bilateral eartags (2 on each side) and they were quite large. It took me a long time to ensure insurance would be covering the surgery to remove them b/c it was a fine line between a birth defect and plastic surgery for a cosmetic purpose. We finally saw a craniofacial doc after I was happy he was old enough to be put under (they told me 6mo was ok, but I let 6 mo come and go without feeling ok about it) ~2yrs. He assured me this was a congenital birth defect and everything went very smooth with surgery AND insurance. It was a stressful process, but I am happy we went through with it. His scars are so minimal, only the ones who knew they were there would even see them. 

    One day a well meaning 6-7yr old girl came over and raved about my alien baby & that was it for me. I knew I had the power to do something about it and we did opt to do it.  

    Somedays I miss his little 'wingdings' as we lovingly called them.  In fact, they were just part of my baby, so I do love looking at the old pics of him w/them intact.... but I know it will give him a little bit better opportunity to be picked on something OTHER than his appearance, cause you know how kids are.... they will find SOMETHING to pick on in school ;)

    I wish you and your LO the best & everything will be just fine!! 

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